NDA Help Center

Collection - General Tab

Fields available for edit on the top portion of the page include:

  • Collection Title
  • Investigators
  • Collection Description
  • Collection Phase
  • Funding Source
  • Clinical Trials

Collection Status: The visibility status of an NDA Collection.  Collection Status can be Shared or Private.  Collections in Shared status are visible to all users and can be searched in the NDA Query Tool. Private Collections are not visible to NDA users.  The Status of an NDA Collection only affects the visibility of information about the Collection (metadata) and does not relate to the status of the record-level research data in the NDA Collection.

Collection Phase: The current status of a research project submitting data to an NDA Collection, based on the timing of the award and/or the data that have been submitted.
 

  • Pre-Enrollment: The default entry made when the NDA Collection is created.
     
  • Enrolling: Data have been submitted to the NDA Collection or the NDA Data Expected initial submission date has been reached for at least one data structure category in the NDA Collection.
     
  • Data Analysis: Subject level data collection for the research project is completed and has been submitted to the NDA Collection.  The NDA Collection owner or the NDA Help Desk may set this phase when they’ve confirmed data submission is complete and submitted subject counts match at least 90% of the target enrollment numbers in the NDA Data Expected. Data submission reminders will be turned off for the NDA Collection.
     
  • Funding Completed: The NIH grant award (or awards) associated with the NDA Collection has reached its end date. NDA Collections in Funding Completed phase are assigned a subphase to indicate the status of data submission.
     
    • The Data Expected Subphase indicates that NDA expects more data will be submitted
    • The Closeout Subphase indicates the data submission is complete.
    • The Sharing Not Met Subphase indicates that data submission was not completed as expected. 

Blinded Clinical Trial Status:

  • This status is set by a Collection Owner and indicates the research project is a double blinded clinical trial.  When selected, the public view of Data Expected will show the Data Expected items and the Submission Dates, but the targeted enrollment and subjects submitted counts will not be displayed.
     
  • Targeted enrollment and subjects submitted counts are visible only to NDA Administrators and to the NDA Collection or as the NDA Collection Owner.
     
  • When an NDA Collection that is flagged Blinded Clinical Trial reaches the maximum data sharing date for that Data Repository (see https://nda.nih.gov/about/sharing-regimen.html), the embargo on Data Expected information is released.
     

Funding Source

The organization(s) responsible for providing the funding is listed here. 

Supporting Documentation

Users with Submission privileges, as well as Collection Owners, Program  Officers, and those with Administrator privileges, may upload and attach supporting documentation. By default, supporting documentation is shared to the general public, however, the option is also available to limit this information to qualified researchers only. 

Grant Information 

Identifiable details are displayed about the Project of which the Collection was derived from. You may click in the Project Number to view a full report of the Project captured by the NIH. 

Clinical Trials

Any data that is collected to support or further the research of clinical studies will be available here. Collection Owners and those with Administrator privileges may add new clinical trials. 

Frequently Asked Questions

  • When a Collection is created by NDA staff and marked as Shared, an email notification will automatically be sent to the PI(s) of the grant(s) associated with the Collection to notify them.

  • During Collection creation, NDA staff determine the appropriate Permission Group based on the type of data to be submitted, the type of access that will be available to data access users, and the information provided by the Program Officer during grant award.

  • The NDA system does not allow for a single grant to be associated with more than one Collection; therefore, a single grant will not be listed in the Grant Information section of a Collection for more than one Collection.

  • In general, each Collection is associated with only one grant; however, multiple grants may be associated if the grant has multiple competing segments for the same grant number or if multiple different grants are all working on the same project and it makes sense to hold the data in one Collection (e.g., Cooperative Agreements).

Glossary

  • Number of human subjects enrolled in an NIH-funded clinical research study. The data is provided in annual progress reports.

  • A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users. 

  • Generally, the Collection Owner is the contact PI listed on a grant. Only one NDA user is listed as the Collection owner. Most automated emails are primarily sent to the Collection Owner.

  • The Collection Phase provides information on data submission as opposed to grant/project completion so while the Collection phase and grant/project phase may be closely related they are often different.  Collection users with Administrative Privileges are encouraged to edit the Collection Phase.  The Program Officer as listed in eRA (for NIH funded grants) may also edit this field. Changes must be saved by clicking the Save button at the bottom of the page.  This field is sortable alphabetically in ascending or descending order. Collection Phase options include: 

    • Pre-Enrollment:  A grant/project has started, but has not yet enrolled subjects.
    • Enrolling:  A grant/project has begun enrolling subjects.  Data submission is likely ongoing at this point.
    • Data Analysis:  A grant/project has completed enrolling subjects and has completed all data submissions.
    • Funding Completed:  A grant/project has reached the project end date.
  • The Collection State indicates whether the Collection is viewable and searchable.  Collections can be either Private, Shared, or an Ongoing Study.  A Collection that is shared does not necessarily have shared data as the Collection State and state of data are independent of each other.  This field can be edited by Collection users with Administrative Privileges and the Program Officer as listed in eRA (for NIH funded grants). Changes must be saved by clicking the Save button at the bottom of the page.

  • An editable field with the title of the Collection, which is often the title of the grant associated with the Collection.

  • Data Use Limitations (DULs) describe the appropriate secondary use of a dataset and are based on the original informed consent of a research participant. NDA only accepts consent-based data use limitations defined by the NIH Office of Science Policy.

  • Provides the grant number(s) for the grant(s) associated with the Collection.  The field is a hyperlink so clicking on the Grant number will direct the user to the grant information in the NIH Research Portfolio Online Reporting Tools (RePORT) page.

  • A virtual container and organization structure for data and associated documentation from one grant or one large project/consortium. It contains tools for tracking data submission and allows investigators to define a wide array of other elements that provide context for the data, including all general information regarding the data and source project, experimental parameters used to collect any event-based data contained in the Collection, methods, and other supporting documentation. They also allow investigators to link underlying data to an NDA Study, defining populations and subpopulations specific to research aims. 

  • NDA Collections may be organized by scientific similarity into NIH Research Initiatives, to facilitate query tool user experience. NIH Research Initiatives map to one or multiple Funding Opportunity Announcements. 

  • Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.

  • Number of human subject participants to be enrolled in an NIH-funded clinical research study. The data is provided in competing applications and annual progress reports.

  • Various documents and materials to enable efficient use of the data by investigators unfamiliar with the project and may include the research protocol, questionnaires, and study manuals.  

  • The total number of unique subjects for whom data have been shared and are available for users with permission to access data.

NDA Help Center

Collection - Shared Data Tab

This tab provides a quick overview of the Data Structure title, Data Type, and Number of Subjects that are currently Shared for the Collection. The information presented in this tab is automatically generated by NDA and cannot be edited. If no information is visible on this tab, this would indicate the Collection does not have shared data or the data is private.

The shared data is available to other researchers who have permission to access data in the Collection's designated Permission Group(s). Use the Download button to get all shared data from the Collection to the Filter Cart.

 

Frequently Asked Questions

  • To see what data your project have submitted are being used by a study, simply go the Associated Studies tab of your collection.  Alternatively, you may review an NDA Study Attribution Report available on the General tab.  

  • Often it becomes more difficult to organize and format data electronically after the project has been completed and the information needed to create a GUID may not be available; however, you may still contact a program staff member at the appropriate funding institution for more information.

  • Unlike completed projects where researchers may not have the information needed to create a GUID and/or where the effort needed to organize and format data becomes prohibitive, ongoing projects have more of an opportunity to overcome these challenges.  Please contact a program staff member at the appropriate funding institution for more information.

Glossary

  • A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure

  • A grouping of data by similar characteristics such as Clinical Assessments, Omics, or Neurosignal data.

  • The term 'Shared' generally means available to others; however, there are some slightly different meanings based on what is Shared.  A Shared NDA Collection or NDA Study is viewable and searchable publicly regardless of the user's role or whether the user has an NDA account.  A Shared Collection or NDA Study does not necessarily mean that data submitted to the Collection or used in the NDA Study have been shared as this is independently determined.  Data are shared according the schedule defined in a Collection's Data Expected Tab and/or in accordance with data sharing expectations in the NDA Data Sharing Terms and Conditions.  Additionally, Supporting Documentation uploaded to a Collection may be shared independent of whether data are shared, but will only be viewable and accessible if the Collection is Shared.

NDA Help Center

fMRi

fMRI stands for functional magnetic resonance imaging. fMRI tests measure blood flow, providing detailed functional images of the brain or body. 

Acquisition
The Acquisition parameters needed for an experiment include the following:

The name of the experiment is required. Please be concise and specific as possible.
Following experiment name, selection boxes are provided for the Equipment, Software, or other items specific to the experiment type. At least one selection is required for each. If NDAR does not have the appropriate listing, select Add New to add the information provided. Following the selection boxes, provide additional information may be required depending on the experiment type. Any required items are denoted by an asterisk (*).

Block/Event Design
At least one block/event is required. Note that any fields denoted with an asterisk (*) are required. All data must be devoid of personally identifiable data, including the contents of any files attached to the experiment.

Note: To simplify the definition of multiple events, we provide an Import from XML function. This function supports importing data from all three experiment sections (Acquisition, Block/Event Design, and Post Processing), at this time files cannot be uploaded from XML A test format is provided here and our XML Schema Definition (xsd) can be found here.

Post Processing
If you have completed any post-processing on your data, please choose 'Yes' for Has Postprocessing? If not, select 'No'. Depending on this selection the remaining post-processing fields will be enabled (some of which will be required). If you are initially providing data you can select 'No', then return to the experiment to add post-processing steps at a later date when the data are being provided.

Please provide information about post-processing manipulations, i.e. artifact detection algorithms, segmentation used for post data collection, items denoted with an asterisk (*) are required.

Frequently Asked Questions

Glossary

  • This button will add all selections to the Filter Cart. 

  • This button will allow you to copy all of the Experiment details as a template for a new experiment. 

  • Adds all data from the current selections in a Collection or NDA Study to the Filter Cart.

  • This button will allow you to return to the Experiments tab. 

NDA Help Center

Collection - Submissions Tab

Users with permission to access Shared data in the Collection’s assigned Permission Group may use this tab. 

Here, you can:

  • Review your uploads to your Collection, monitor their status, and download them individually to verify their contents.
  • Download individual datasets as a secondary user of the data approved for access.
  • Identify and download datasets containing errors identified by NDA's QA/QC process for review and resolution.
  • Report suspected or discovered Personally Identifiable Information in a submission via the Actions column.

Frequently Asked Questions

Glossary

  • The default view of Datasets within a Collection's Submission tab.

  • A Submission Loading Status on a Collection's Submission Tab that indicates that an issue has prevented the successful loading of the submission.  Users should contact the NDA Help Desk for assistance at NDAHelp@mail.nih.gov.

  • The NDA has two Submission Cycles per year - January 15 and July 15.

  • An interface to notify NDA that data may not be submitted during the upcoming/current submission cycle.  

  • The unique and sequentially assigned ID for a submission (e.g. a discrete upload via the Validation and Upload Tool), which may contain any number of datafiles, Data Structures and/or Data Types, regardless of the Submission Loading Status. A single submission may be divided into multiple Datasets, which are based on Data Type.

  • The total number of unique subjects for whom data have been shared and are available for users with permission to access data.

  • The total number of unique subjects for whom data have been submitted, which includes data in both a Private State and a Shared State.

NDA Help Center

Collection - Publications Tab

The number of Publications is displayed in parentheses next to the tab name. Clicking on any of the Publication Titles will open the Publication in a new internet browsing tab. 

Collection Owners, Program Officers, and users with Submission or Administrative Privileges for the Collection may mark a publication as either Relevant or Not Relevant in the Status column. 

 

Frequently Asked Questions

  • Publications are considered relevant to a collection when the data shared is directly related to the project or collection.

  • PubMed, an online library containing journals, articles, and medical research. Sponsored by NiH and National Library of Medicine (NLM). 

Glossary

  • A link to the Create an NDA Study page that can be clicked to start creating an NDA Study with information such as the title, journal and authors automatically populated.

  • Indicates that the publication has not yet been reviewed and/or marked as Relevant or Not Relevant so it has not been determined whether an NDA Study is expected.

  • A publication that is not based on data related to the aims of the grant/project associated with the Collection or not based on any data such as a review article and, therefore, an NDA Study is not expected to be created.

  • PubMed provides citation information for biomedical and life sciences publications and is managed by the U.S. National Institutes of Health's National Library of Medicine.

  • The PUBMed ID is the unique ID number for the publication as recorded in the PubMed database.  

  • A publication that is based on data related to the aims of the grant/project associated with the Collection and, therefore, an NDA Study is expected to be created.

NDA Help Center

EEG

EEG stands for electroencencephalogram and is a test used to measure electrical activity in the brain.

Acquisition
The Acquisition parameters needed for an experiment include the following:

Name of the experiment is required. Please be concise and specific as possible.
Following experiment name, selection boxes are provided for the Equipment, Software, or other items specific to experiment type. At least one selection is required for each. If NDAR does not have the appropriate listing, select Add New to add the information provided. Following the selection boxes, provide additional information may be required depending on experiment type. Any required items are denoted by an asterisk (*).

Block/Event Design
At least one block/event is required. Note that any fields denoted with an asterisk (*) are required. All data must be devoid of personally identifiable data, including the contents of any files attached to the experiment.

Note: To simplify definition of multiple events, we provide an Import from XML function. This function supports importing data from all three experiment sections (Acquisition, Block/Event Design, and Post Processing), at this time files cannot be uploaded from XML A test format is provided here and our XML Schema Definition (xsd) can be found here.

Post Processing
If you have completed any post processing on your data, please choose 'Yes' for Has Postprocessing? If not, select 'No'. Depending on this selection the remaining post processing fields will be enabled (some of which will be required). If you are initially providing data you can select 'No', then return to the experiment to add post processing steps at a later date when the data are being provided.

Please provide information about post-processing manipulations, i.e. artifact detection algorithms, segmentation used for post data collection, items denoted with an asterisk (*) are required.

Frequently Asked Questions

Glossary

  • This button will add all selections to the Filter Cart. 

  • This button will allow you to copy all of the Experiment details as a template for a new experiment. 

  • Adds all data from the current selections in a Collection or NDA Study to the Filter Cart.

  • This button will allow you to return to the Experiments tab. 

NDA Help Center

Collection - Data Expected

The Data Expected tab displays the list of all data that NDA expects to receive in association with the Collection as defined by the contributing researcher, as well as the dates for the expected initial upload of the data, and when it is first expected to be shared, or with the research community. Above the primary table of Data Expected, any publications determined to be relevant to the data within the Collection are also displayed - members of the contributing research group can use these to define NDA Studies, connecting those papers to underlying data in NDA.

The tab is used both as a reference for those accessing shared data, providing information on what is expected and when it will be shared, and as the primary tracking mechanism for contributing projects. It is used by both contributing primary researchers, secondary researchers, and NIH Program and Grants Management staff.

Contributing researchers just getting started on their project will need to define this list by adding all of the items they are collecting under their grant and setting their schedule according to the NDA Data Sharing Regimen. If you fall into this category, you can begin by clicking "add new Data Expected" and selecting which data structures you will be using, saving the page after each change, or requesting new structures by adding and naming a new item, providing any materials NDA Data Dictionary Curators can use to help define your structure. For more information see the tutorial on creating Data Expected.

If you are a contributing researcher creating this list for the first time, or making changes to the list as your project progress, please note the following:

  • Although items you add to the list and changes you make are displayed, they are not committed to the system until you Save the entire page using the "Save" button at the bottom of your screen. Please Save after every change to ensure none of your work is lost.
  • If you attempt to add a new structure, the title you provide must be unique - if another structure exists with the same name your change will fail.
  • Adding a new structure to this list is the only way to request the creation of a new Data Dictionary definition.

 

Frequently Asked Questions

  • An NDA Data Structure is comprised of multiple Data Elements to make up an electronic definition of an assessment, measure, questionnaire, etc will have a corresponding Data Structure.

  • The NDA Data Dictionary is comprised of electronic definitions known as Data Structures.

Glossary

  • Data specific to the primary aims of the research being conducted (e.g. outcome measures, other dependent variables, observations, laboratory results, analyzed images, volumetric data, etc.) including processed images.

  • Items listed on the Data Expected list in the Collection which may be an individual and discrete Data Structure, Data Structure Category, or Data Structure Group.

  • A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure

  • An NDA term describing the affiliation of a Data Structure to a Category, which may be disease/disorder or diagnosis related (Depression, ADHD, Psychosis), specific to data type (MRI, eye tracking, omics), or type of data (physical exam, IQ).

  • A Data Item listed on the Data Expected tab of a Collection that indicates a group of Data Structures (e.g., ADOS or SCID) for which data may be submitted instead of a specific Data Structure identified by version, module, edition, etc. For example, the ADOS Data Structure Category includes every ADOS Data Structure such as ADOS Module 1, ADOS Module 2, ADOS Module 1 - 2nd Edition, etc. The SCID Data Structure Group includes every SCID Data Structure such as SCID Mania, SCID V Mania, SCID PTSD, SCID-V Diagnosis, and more. 

  • A new Data Structure category, Evaluated Data is analyzed data resulting from the use of computational pipelines in the Cloud and can be uploaded directly back to a miNDAR database.  Evaluated Data is expected to be listed as a Data Item in the Collection's Data Expected Tab.

  • Imaging+ is an NDA term which encompasses all imaging related data including, but not limited to, images (DTI, MRI, PET, Structural, Spectroscopy, etc.) as well as neurosignal data (EEG, fMRI, MEG, EGG, eye tracking, etc.) and Evaluated Data.

  • Initial Submission and Initial Share dates should be populated according to the NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data will be shared with authorized users upon publication (via an NDA Study) or 1-2 years after the grant end date specified on the first Notice of Award, as defined in the applicable Data Sharing Terms and Conditions.

  • Initial Submission and Initial Share dates should be populated according to these NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data for all subjects is not expected on the Initial Submission Date and modifications may be made as necessary based on the project's conduct.

  • An NDA created Data Structure used to convey basic information about the subject such as demographics, pedigree (links family GUIDs), diagnosis/phenotype, and sample location that are critical to allow for easier querying of shared data.

  • The NDA has two Submission Cycles per year - January 15 and July 15.

  • An interface to notify NDA that data may not be submitted during the upcoming/current submission cycle.  

NDA Help Center

Collection - Permissions

Collection Owners, Program Officers, and users with Administrator privileges may view this tab.

The available permission groups include:

  • Query: This read-only access is generally for NIH Program Officers
  • Submission: This will grant read access and allow the user to upload data and create experiment definitions. This is for the typical contributing personnel member.
  • Administrator: In addition to the access provided to Query and Submission users, Admins can also edit the Collection itself, create or edit the Data Expected list, and edit user permissions. This access is for the PI, data managers, and anyone they wish to delegate this to.

The PI has a special designation as the Collection Owner in addition to administrator access.

Frequently Asked Questions

  • Collection Owners and Admins may assign Collection Privileges to anyone.

  • Yes, you can assign various Privileges to other users with an NDA account.

  • If you are the Collection Owner or have Admin privileges, you can view and make changes to the list of individuals who have access to the Collection on the Collection's Permissions tab.  Information on users who have access to data Shared in your Collection because they were granted access to a Permission Group is not available.

  • Staff/collaborators who are working submitting data to the Collection, checking the quality of the data, and/or analyzing data should have access for the duration of the project until all data have been submitted, NDA Studies have been created for data used in publications, and/or a collaborative relationship with the user exists.  

  • The individual listed as an Investigator on the General tab of the NDA Collection will generally be able to provide a user access to the NDA Collection.  Additional users may also have this ability if granted Administrator access to an NDA Collection; however, these users are not viewable unless your account has access to the NDA Collection.  Given this, it is best to contact the Investigator to request access to the Collection.

  • Privileges that can be assigned to a user include:
    Submission allows a user to submit data to Collection
    Query allows the user to download data from Collection even when in a Private state
    Admin is both the Submission and Query Privilege + the ability to give privileges to other users.

  • You may have staff who are working on the submission of data or other activities associated with data sharing such as the definition of the Data Expected list or NDA Experiment creation.  Also, many projects have multiple performance sites and wish to share data among the site PIs.  Submitting to the NDA facilitates access by all investigators working on a project even before data have been shared with other users.  You can control who gets access to data while in a Private state.

Glossary

  • A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users. 

  • Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.

NDA Help Center

Eye Tracking

EyeTracking tests follow the movement of the eye. The visual trajectory or focus can help determine predictions and assist in diagnoses. 

Acquisition
The Acquisition parameters needed for an experiment include the following:

The name of the experiment is required. Please be concise and specific as possible.
Following experiment name, selection boxes are provided for the Equipment, Software, or other items specific to the experiment type. At least one selection is required for each. If NDAR does not have the appropriate listing, select Add New to add the information provided. Following the selection boxes, provide additional information may be required depending on the experiment type. Any required items are denoted by an asterisk (*).

Block/Event Design
At least one block/event is required. Note that any fields denoted with an asterisk (*) are required. All data must be devoid of personally identifiable data, including the contents of any files attached to the experiment.

Note: To simplify the definition of multiple events, we provide an Import from XML function. This function supports importing data from all three experiment sections (Acquisition, Block/Event Design, and Post Processing), at this time files cannot be uploaded from XML A test format is provided here and our XML Schema Definition (xsd) can be found here.

Post Processing
If you have completed any post-processing on your data, please choose 'Yes' for Has Postprocessing? If not, select 'No'. Depending on this selection the remaining post-processing fields will be enabled (some of which will be required). If you are initially providing data you can select 'No', then return to the experiment to add post-processing steps at a later date when the data are being provided.

Please provide information about post-processing manipulations, i.e. artifact detection algorithms, segmentation used for post data collection, items denoted with an asterisk (*) are required.

Frequently Asked Questions

Glossary

  • This button will add all selections to the Filter Cart. 

  • This button will allow you to copy all of the Experiment details as a template for a new experiment. 

  • Adds all data from the current selections in a Collection or NDA Study to the Filter Cart.

  • This button will allow you to return to the Experiments tab. 

NDA Help Center

Collection - Experiments Tab

The number of Experiments included is displayed in parentheses next to the tab name. You may download all experiments associated with the Collection via the Download button. You may view individual experiments by clicking the Experiment Name and add them to the Filter Cart via the Add to Cart button.

Collection Owners, Program Officers, and users with Submission or Administrative Privileges for the Collection may create or edit an Experiment.

Please note: The creation of an NDA Experiment does not necessarily mean that data collected, according to the defined Experiment, has been submitted or shared.

Frequently Asked Questions

  • Yes -see the “Copy” button in the bottom left when viewing an experiment. There are two actions that can be performed via this button:

    1. Copy the experiment with intent for modifications.  
    2. Associate the experiment to the collection. No modifications can be made to the experiment.

     

Glossary

  • An Experiment must be Approved before data using the associated Experiment_ID may be uploaded.

  • The ID number automatically generated by NDA which must be included in the appropriate file when uploading data to link the Experiment Definition to the subject record.

NDA Help Center

Omics

Omics is a collective group of technologies, related to a field of study in Biology such as Genomics or proteomics. 

Experiment Parameters

To define an Omics experiment, provide a meaningful name and select a single molecule. The standard molecules are listed. However, if you are doing proteomic or environmental experiments, simply “Add New” and the new selection will be created. Only one value for molecule is permitted.

Next the technology (box 2) associated with the molecule will be presented along with its application. Again, only one selection is possible. If you wish to see all of NDAR’s options for any one box, Select “Show All”.

Platform

Continue to select the Platform (box 3).

Extraction

Next, the Extraction Protocol (box 4) and Kits (box 5) are presented based upon the Molecule selected and the Processing Protocol (box 6) and Kits (box 7) are presented based upon the Molecule and Technology Application (Box 1 and 2)

Processing

Note that for each of these (boxes 4, 5, 6, and 7) multiple selections are possible.

Additional Information

Lastly, the Software (box 8) and Equipment (box 9) is expected.

 

Once saved, the experiment will be associated with the Collection and by using the returned Experiment_ID, the NDA makes it possible to associate the experiment meta data directly with the data from the experiment.

Frequently Asked Questions

Glossary

  • This button will add all selections to the Filter Cart. 

  • This button will allow you to copy all of the Experiment details as a template for a new experiment. 

  • Adds all data from the current selections in a Collection or NDA Study to the Filter Cart.

  • This button will allow you to return to the Experiments tab. 

NDA Help Center

Collection - Associated Studies

Clicking on the Study Title will open the study details in a new internet browser tab. The Abstract is available for viewing, providing the background explanation of the study, as provided by the Collection Owner. 

Primary v. Secondary Analysis: The Data Usage column will have one of these two choices. An associated study that is listed as being used for Primary Analysis indicates at least some and potentially all of the data used was originally collected by the creator of the NDA Study. Secondary Analysis indicates the Study owner was not involved in the collection of data, and may be used as supporting data. 

Private v. Shared State: Studies that remain private indicate the associated study is only available to users who are able to access the collection. A shared study is accessible to the general public. 

Frequently Asked Questions

  • Studies are associated to the Collection automatically when the data is defined in the Study. 

Glossary

  • A tab in a Collection that lists the NDA Studies that have been created using data from that Collection including both Primary and Secondary Analysis NDA Studies.

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Format should be in the following format: Activity Code, Institute Abbreviation, and Serial Number. Grant Type, Support Year, and Suffix should be excluded. For example, grant 1R01MH123456-01A1 should be entered R01MH123456

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Collection - Use Existing Experiment

To associate an experiment to the current collection, just select an axperiment from the table below then click the associate experiment button to persist your changes (saving the collection is not required). Note that once an experiment has been associated to two or more collections, the experiment will not longer be editable.

The table search feature is case insensitive and targets the experiment id, experiment name and experiment type columns. The experiment id is searched only when the search term entered is a number, and filtered using a startsWith comparison. When the search term is not numeric the experiment name is used to filter the results.

SelectExperiment IdExperiment NameExperiment Type
Created On
24HI-NGS_R1Omics02/16/2011
475MB1-10 (CHOP)Omics06/07/2016
490Illumina Infinium PsychArray BeadChip AssayOmics07/07/2016
501PharmacoBOLD Resting StatefMRI07/27/2016
506PVPREFOmics08/05/2016
509ABC-CT Resting v2EEG08/18/2016
13Comparison of FI expression in Autistic and Neurotypical Homo SapiensOmics12/28/2010
18AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics01/06/2011
22Stitching PCR SequencingOmics02/14/2011
26ASD_MethylationOmics03/01/2011
29Microarray family 03 (father, mother, sibling)Omics03/24/2011
37Standard paired-end sequencing of BCRsOmics04/19/2011
38Illumina Mate-Pair BCR sequencingOmics04/19/2011
39Custom Jumping LibrariesOmics04/19/2011
40Custom CapBPOmics04/19/2011
41ImmunofluorescenceOmics05/11/2011
43Autism brain sample genotyping, IlluminaOmics05/16/2011
47ARRA Autism Sequencing Collaboration at Baylor. SOLiD 4 SystemOmics08/01/2011
53AGRE Omni1-quadOmics10/11/2011
59AGP genotypingOmics04/03/2012
60Ultradeep 454 sequencing of synaptic genes from postmortem cerebella of individuals with ASD and neurotypical controlsOmics06/23/2012
63Microemulsion PCR and Targeted Resequencing for Variant Detection in ASDOmics07/20/2012
76Whole Genome Sequencing in Autism FamiliesOmics01/03/2013
519RestingfMRI11/08/2016
90Genotyped IAN SamplesOmics07/09/2013
91NJLAGS Axiom Genotyping ArrayOmics07/16/2013
93AGP genotyping (CNV)Omics09/06/2013
106Longitudinal Sleep Study. H20 200. Channel set 2EEG11/07/2013
107Longitudinal Sleep Study. H20 200. Channel set 3EEG11/07/2013
108Longitudinal Sleep Study. AURA 200EEG11/07/2013
105Longitudinal Sleep Study. H20 200. Channel set 1EEG11/07/2013
109Longitudinal Sleep Study. AURA 400EEG11/07/2013
116Gene Expression Analysis WG-6Omics01/07/2014
131Jeste Lab UCLA ACEii: Charlie Brown and Sesame Street - Project 1Eye Tracking02/27/2014
132Jeste Lab UCLA ACEii: Animacy - Project 1Eye Tracking02/27/2014
133Jeste Lab UCLA ACEii: Mom Stranger - Project 2Eye Tracking02/27/2014
134Jeste Lab UCLA ACEii: Face Emotion - Project 3Eye Tracking02/27/2014
145AGRE/FMR1_Illumina.JHUOmics04/14/2014
146AGRE/MECP2_Sanger.JHUOmics04/14/2014
147AGRE/MECP2_Junior.JHUOmics04/14/2014
151Candidate Gene Identification in familial AutismOmics06/09/2014
152NJLAGS Whole Genome SequencingOmics07/01/2014
154Math Autism Study - Vinod MenonfMRI07/15/2014
155RestingfMRI07/25/2014
156SpeechfMRI07/25/2014
159EmotionfMRI07/25/2014
160syllable contrastEEG07/29/2014
167School-age naturalistic stimuliEye Tracking09/19/2014
44AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics06/27/2011
45Exome Sequencing of 20 Sporadic Cases of Autism Spectrum DisorderOmics07/15/2011
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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Connectomic imaging in familial and sporadic frontotemporal degeneration
Murray Grossman 
Neurodegenerative disease is a major public health problem. Frontotemporal degeneration FTD is a clinical neurodegenerative condition that affects both gray matter GM and white matter WM and causes a network disorder. FTD is an excellent model for directly imaging the neurobiology of neurodegeneration because the associated pathology involves a monoproteinopathy in each patient - either frontotemporal lobar degeneration FTLD due to tau FTLD-tau or to TAR DNA binding protein of 43kD FTLD-TDP. We propose a connectomic approach to identify FTLD-tau and FTLD-TDP in vivo. This is timely because of the discovery of disease-modifying agents, and pressing needs for accurate antemortem diagnosis, biomarkers to gauge response during treatment trials, and elucidation of mechanisms of disease progression even at the preclinical stage. About 25 percent of cases have familial FTD fFTD due to a small set of mutations causing one of these pathologies. The remaining 75 percent of cases have sporadic FTD sFTD with no definitive biomarkers for FTLDtau or FTLD-TDP pathology. Preliminary data suggest that multimodal structural MRI sMRI of GM disease and diffusion MRI dMRI of WM disease can identify vulnerable networks in FTLD-tau and FTLD-TDP. We propose a five-site consortium, including Mayo Clinic, MGH Harvard, Northwestern University, University of California in San Francisco, and University of Pennsylvania, to acquire HCP imaging in FTD. This will be linked to two NIH-funded biomarker registries, and this linkage will result in substantial cost savings. We propose three Specific Aims. In Year 01, Aim 1 will implement and validate the Human Connectome Project HCP Lifespan protocol for sMRI, dMRI, resting BOLD MRI rs-fMRI, task-based functional MRI tfMRI and arterial spin labeling ASL. We will acquire initial data, harmonize data between sites and with HCP, implement quality control procedures, optimize analyses using HCP and locally-developed pipelines, and implement data sharing procedures. In Year 02, Aim 2 will study presymptomatic and symptomatic fFTD associated with FTLD-tau or FTLD-TDP, and assess sFTD in specific phenotypes highly associated with FTLD-tau or FTLD-TDP. Connectomic imaging will be integrated with NIH-funded registries that acquire clinical, genetic and biofluid data. Based on histopathology showing greater WM disease in FTLD-tau than FTLD-TDP, we expect advanced HCP imaging to show partially distinct patterns in multimodal imaging of symptomatic as well as presymptomatic individuals with familial and sporadic FTLD-tau compared to FTLD-TDP. In Years 03-04, Aim 3 will acquire longitudinal data to assess competing hypotheses about mechanisms of disease spread in presymptomatic and symptomatic FTD. Consistent with animal studies, we expect that graph theoretic and multimodal network analyses will show disease spreading locally to adjacent brain regions, affecting different networks in FTLD-tau or FTLD-TDP.
Connectome Coordination Facility
04/26/2019
Human Connectome Project (HCP)
Funding Completed
Data Expected
Shared
No
$5,913,583.00
0
Loading Chart...
NIH - Extramural None


U01AG052943-01 Connectomic imaging in familial and sporadic frontotemporal degeneration 06/01/2016 05/31/2022 200 265 UNIVERSITY OF PENNSYLVANIA $5,913,583.00

helpcenter.collection.general-tab

NDA Help Center

Collection - General

Fields available for edit on the top portion of the page include:

  • Collection Title
  • Investigators
  • Collection Description
  • Collection Phase
  • Funding Source
  • Clinical Trials

Collection Status: The visibility status of an NDA Collection. Collection Status can be Shared or Private. Collections in Shared status are visible to all users and can be searched in the NDA Query Tool. Private Collections are not visible to NDA users. The Status of an NDA Collection only affects the visibility of information about the Collection (metadata) and does not relate to the status of the record-level research data in the NDA Collection.

Collection Phase: The current status of a research project submitting data to an NDA Collection, based on the timing of the award and/or the data that have been submitted.

  • Pre-Enrollment: The default entry made when the NDA Collection is created.
  • Enrolling: Data have been submitted to the NDA Collection or the NDA Data Expected initial submission date has been reached for at least one data structure category in the NDA Collection.
  • Data Analysis: Subject level data collection for the research project is completed and has been submitted to the NDA Collection. The NDA Collection owner or the NDA Help Desk may set this phase when they’ve confirmed data submission is complete and submitted subject counts match at least 90% of the target enrollment numbers in the NDA Data Expected. Data submission reminders will be turned off for the NDA Collection.
  • Funding Completed: The NIH grant award (or awards) associated with the NDA Collection has reached its end date. NDA Collections in Funding Completed phase are assigned a subphase to indicate the status of data submission.
    • The Data Expected Subphase indicates that NDA expects more data will be submitted
    • The Closeout Subphase indicates the data submission is complete.
    • The Sharing Not Met Subphase indicates that data submission was not completed as expected.

Blinded Clinical Trial Status:

  • This status is set by a Collection Owner and indicates the research project is a double blinded clinical trial. When selected, the public view of Data Expected will show the Data Expected items and the Submission Dates, but the targeted enrollment and subjects submitted counts will not be displayed.
  • Targeted enrollment and subjects submitted counts are visible only to NDA Administrators and to the NDA Collection or as the NDA Collection Owner.
  • When an NDA Collection that is flagged Blinded Clinical Trial reaches the maximum data sharing date for that Data Repository (see https://nda.nih.gov/about/sharing-regimen.html), the embargo on Data Expected information is released.

Funding Source

The organization(s) responsible for providing the funding is listed here.

Supporting Documentation

Users with Submission privileges, as well as Collection Owners, Program Officers, and those withAdministrator privileges, may upload and attach supporting documentation. By default, supporting documentation is shared to the general public, however, the optionis also available tolimit this information to qualified researchers only.

Grant Information

Identifiable details are displayed about the Project of which the Collection was derived from. You may click in the Project Number to view a full report of the Project capturedby the NIH.

Clinical Trials

Any data that is collected to support or further the research of clinical studies will be available here. Collection Owners and those with Administrator privileges may add new clinical trials.

Frequently Asked Questions

  • How do I know when a NDA Collection has been created?
    When a Collection is created by NDA staff and marked as Shared, an email notification will automatically be sent to the PI(s) of the grant(s) associated with the Collection to notify them.
  • How does the NIMH Data Archive (NDA) determine which Permission Group data are submitted into?
    During Collection creation, NDA staff determine the appropriate Permission Group based on the type of data to be submitted, the type of access that will be available to data access users, and the information provided by the Program Officer during grant award.
  • Is a single grant number ever associated with more than one Collection?
    The NDA system does not allow for a single grant to be associated with more than one Collection; therefore, a single grant will not be listed in the Grant Information section of a Collection for more than one Collection.
  • Why is there sometimes more than one grant included in a Collection?
    In general, each Collection is associated with only one grant; however, multiple grants may be associated if the grant has multiple competing segments for the same grant number or if multiple different grants are all working on the same project and it makes sense to hold the data in one Collection (e.g., Cooperative Agreements).

Glossary

  • Actual Enrollment
    Number of human subjects enrolled in an NIH-funded clinical research study. The data is provided in annual progress reports.
  • Administrator Privilege
    A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users.
  • Collection Owner
    Generally, the Collection Owner is the contact PI listed on a grant. Only one NDA user is listed as the Collection owner. Most automated emails are primarily sent to the Collection Owner.
  • Data Use Limitations
    Data Use Limitations (DULs) describe the appropriate secondary use of a dataset and are based on the original informed consent of a research participant. NDA only accepts consent-based data use limitations defined by the NIH Office of Science Policy.
  • Grant
    Provides the grant number(s) for the grant(s) associated with the Collection. The field is a hyperlink so clicking on the Grant number will direct the user to the grant information in the NIH Research Portfolio Online Reporting Tools (RePORT) page.
  • NDA Collection
    A virtual container and organization structure for data and associated documentation from one grant or one large project/consortium. It contains tools for tracking data submission and allows investigators to define a wide array of other elements that provide context for the data, including all general information regarding the data and source project, experimental parameters used to collect any event-based data contained in the Collection, methods, and other supporting documentation. They also allow investigators to link underlying data to an NDA Study, defining populations and subpopulations specific to research aims.
  • Permission Group
    Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.
  • Collection Phase
    The Collection Phase provides information on data submission as opposed to grant/project completion so while the Collection phase and grant/project phase may be closely related they are often different. Collection users with Administrative Privileges are encouraged to edit the Collection Phase. The Program Officer as listed in eRA (for NIH funded grants) may also edit this field. Changes must be saved by clicking the Save button at the bottom of the page. This field is sortable alphabetically in ascending or descending order. Collection Phase options include:
    • Pre-Enrollment: A grant/project has started, but has not yet enrolled subjects.
    • Enrolling: A grant/project has begun enrolling subjects. Data submission is likely ongoing at this point.
    • Data Analysis: A grant/project has completed enrolling subjects and has completed all data submissions.
    • Funding Completed: A grant/project has reached the project end date.
  • Planned Enrollment
    Number of human subject participants to be enrolled in an NIH-funded clinical research study. The data is provided in competing applications and annual progress reports.
  • NIH Research Initiative
    NDA Collections may be organized by scientific similarity into NIH Research Initiatives, to facilitate query tool user experience. NIH Research Initiatives map to one or multiple Funding Opportunity Announcements.
  • Collection State
    The Collection State indicates whether the Collection is viewable and searchable. Collections can be either Private, Shared, or an Ongoing Study. A Collection that is shared does not necessarily have shared data as the Collection State and state of data are independent of each other. This field can be edited by Collection users with Administrative Privileges and the Program Officer as listed in eRA (for NIH funded grants). Changes must be saved by clicking the Save button at the bottom of the page.
  • Supporting Documentation
    Various documents and materials to enable efficient use of the data by investigators unfamiliar with the project and may include the research protocol, questionnaires, and study manuals.
  • Collection Title
    An editable field with the title of the Collection, which is often the title of the grant associated with the Collection.
  • Total Subjects Shared
    The total number of unique subjects for whom data have been shared and are available for users with permission to access data.
IDNameCreated DateStatusType
No records found.
helpcenter.collection.experiments-tab

NDA Help Center

Collection - Experiments

The number of Experiments included is displayed in parentheses next to the tab name. You may download all experiments associated with the Collection via the Download button. You may view individual experiments by clicking the Experiment Name and add them to the Filter Cart via the Add to Cart button.

Collection Owners, Program Officers, and users with Submission or Administrative Privileges for the Collection may create or edit an Experiment.

Please note: The creation of an NDA Experiment does not necessarily mean that data collected, according to the defined Experiment, has been submitted or shared.

Frequently Asked Questions

  • Can an Experiment be associated with more than one Collection?

    Yes -see the “Copy” button in the bottom left when viewing an experiment. There are two actions that can be performed via this button:

    1. Copy the experiment with intent for modifications.
    2. Associate the experiment to the collection. No modifications can be made to the experiment.

Glossary

  • Experiment Status
    An Experiment must be Approved before data using the associated Experiment_ID may be uploaded.
  • Experiment ID
    The ID number automatically generated by NDA which must be included in the appropriate file when uploading data to link the Experiment Definition to the subject record.

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Shared Data

Data structures with the number of subjects submitted and shared are provided.

helpcenter.collection.shared-data-tab

NDA Help Center

Collection - Shared Data

This tab provides a quick overview of the Data Structure title, Data Type, and Number of Subjects that are currently Shared for the Collection. The information presented in this tab is automatically generated by NDA and cannot be edited. If no information is visible on this tab, this would indicate the Collection does not have shared data or the data is private.

The shared data is available to other researchers who have permission to access data in the Collection's designated Permission Group(s). Use the Download button to get all shared data from the Collection to the Filter Cart.

Frequently Asked Questions

  • How will I know if another researcher uses data that I shared through the NIMH Data Archive (NDA)?
    To see what data your project have submitted are being used by a study, simply go the Associated Studies tab of your collection. Alternatively, you may review an NDA Study Attribution Report available on the General tab.
  • Can I get a supplement to share data from a completed research project?
    Often it becomes more difficult to organize and format data electronically after the project has been completed and the information needed to create a GUID may not be available; however, you may still contact a program staff member at the appropriate funding institution for more information.
  • Can I get a supplement to share data from a research project that is still ongoing?
    Unlike completed projects where researchers may not have the information needed to create a GUID and/or where the effort needed to organize and format data becomes prohibitive, ongoing projects have more of an opportunity to overcome these challenges. Please contact a program staff member at the appropriate funding institution for more information.

Glossary

  • Data Structure
    A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure
  • Data Type
    A grouping of data by similar characteristics such as Clinical Assessments, Omics, or Neurosignal data.
  • Shared
    The term 'Shared' generally means available to others; however, there are some slightly different meanings based on what is Shared. A Shared NDA Collection or NDA Study is viewable and searchable publicly regardless of the user's role or whether the user has an NDA account. A Shared Collection or NDA Study does not necessarily mean that data submitted to the Collection or used in the NDA Study have been shared as this is independently determined. Data are shared according the schedule defined in a Collection's Data Expected Tab and/or in accordance with data sharing expectations in the NDA Data Sharing Terms and Conditions. Additionally, Supporting Documentation uploaded to a Collection may be shared independent of whether data are shared, but will only be viewable and accessible if the Collection is Shared.

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Publications

Publications relevant to NDA data are listed below. Most displayed publications have been associated with the grant within Pubmed. Use the "+ New Publication" button to add new publications. Publications relevant/not relevant to data expected are categorized. Relevant publications are then linked to the underlying data by selecting the Create Study link. Study provides the ability to define cohorts, assign subjects, define outcome measures and lists the study type, data analysis and results. Analyzed data and results are expected in this way.

PubMed IDStudyTitleJournalAuthorsDateStatus
36066634Create StudyIsoform-specific patterns of tau burden and neuronal degeneration in MAPT-associated frontotemporal lobar degeneration.Acta neuropathologicaGiannini, Lucia A A; Ohm, Daniel T; Rozemuller, Annemieke J M; Dratch, Laynie; Suh, EunRan; van Deerlin, Vivianna M; Trojanowski, John Q; Lee, Edward B; van Swieten, John C; Grossman, Murray; Seelaar, Harro; Irwin, David J; Netherlands Brain BankDecember 1, 2022Not Determined
35985146Create StudyNatural speech markers of Alzheimer''s disease co-pathology in Lewy body dementias.Parkinsonism & related disordersShellikeri, Sanjana; Cho, Sunghye; Cousins, Katheryn A Q; Liberman, Mark; Howard, Erica; Balganorth, Yvonne; Weintraub, Daniel; Spindler, Meredith; Deik, Andres; Lee, Edward B; Trojanowski, John Q; Irwin, David; Wolk, David; Grossman, Murray; Nevler, NaomiSeptember 1, 2022Not Determined
35914945Create StudyAutomated Detection of Speech Timing Alterations in Autopsy-Confirmed Nonfluent/Agrammatic Variant Primary Progressive Aphasia.NeurologyGarcía, Adolfo M; Welch, Ariane E; Mandelli, Maria Luisa; Henry, Maya L; Lukic, Sladjana; Torres Prioris, María José; Deleon, Jessica; Ratnasiri, Buddhika M; Lorca-Puls, Diego L; Miller, Bruce L; Seeley, William; Vogel, Adam P; Gorno-Tempini, Maria LuisaAugust 2, 2022Not Determined
35877814Create StudyElevated Plasma Phosphorylated Tau 181 in Amyotrophic Lateral Sclerosis.Annals of neurologyCousins, Katheryn A Q; Shaw, Leslie M; Shellikeri, Sanjana; Dratch, Laynie; Rosario, Luis; Elman, Lauren B; Quinn, Colin; Amado, Defne A; Wolk, David A; Tropea, Thomas F; Chen-Plotkin, Alice; Irwin, David J; Grossman, Murray; Lee, Edward B; Trojanowski, John Q; McMillan, Corey TNovember 1, 2022Not Determined
35689029Create StudyASLPrep: a platform for processing of arterial spin labeled MRI and quantification of regional brain perfusion.Nature methodsAdebimpe, Azeez; Bertolero, Maxwell; Dolui, Sudipto; Cieslak, Matthew; Murtha, Kristin; Baller, Erica B; Boeve, Bradley; Boxer, Adam; Butler, Ellyn R; Cook, Phil; Colcombe, Stan; Covitz, Sydney; Davatzikos, Christos; Davila, Diego G; Elliott, Mark A; Flounders, Matthew W; Franco, Alexandre R; Gur, Raquel E; Gur, Ruben C; Jaber, Basma; McMillian, Corey; ALLFTD Consortium; Milham, Michael; Mutsaerts, Henk J M M; Oathes, Desmond J; Olm, Christopher A; Phillips, Jeffrey S; Tackett, Will; Roalf, David R; Rosen, Howard; Tapera, Tinashe M; Tisdall, M Dylan; Zhou, Dale; Esteban, Oscar; Poldrack, Russell A; Detre, John A; Satterthwaite, Theodore DJune 1, 2022Not Determined
35410909Create StudyDysgraphia Phenotypes in Native Chinese Speakers With Primary Progressive Aphasia.NeurologyTee, Boon Lead; Lorinda Kwan-Chen, Li Ying; Chen, Ta-Fu; Yan, Connie T Y; Tsoh, Joshua; Lung-Tat Chan, Andrew; Wong, Adrian; Lo, Raymond Y; Lu, Chien Long; Wang, Pei-Ning; Lee, YiChen; Yang, Fanpei G; Battistella, Giovanni; Allen, Isabel Elaine; Dronkers, Nina F; Miller, Bruce L; Gorno-Tempini, Maria LuisaMay 31, 2022Not Determined
35325815Create StudyPhases of volume loss in patients with known frontotemporal lobar degeneration spectrum pathology.Neurobiology of agingBurke, Sarah E; Phillips, Jeffrey S; Olm, Christopher A; Peterson, Claire S; Cook, Phillip A; Gee, James C; Lee, Edward B; Trojanowski, John Q; Massimo, Lauren; Irwin, David J; Grossman, MurrayMay 1, 2022Not Determined
35318284Create StudyDivergent Histopathological Networks of Frontotemporal Degeneration Proteinopathy Subytpes.The Journal of neuroscience : the official journal of the Society for NeuroscienceChen, Min; Ohm, Daniel T; Phillips, Jeffrey S; McMillan, Corey T; Capp, Noah; Peterson, Claire; Xie, Emily; Wolk, David A; Trojanowski, John Q; Lee, Edward B; Gee, James; Grossman, Murray; Irwin, David JMay 4, 2022Not Determined
35182511Create StudyAdvances and controversies in frontotemporal dementia: diagnosis, biomarkers, and therapeutic considerations.The Lancet. NeurologyBoeve, Bradley F; Boxer, Adam L; Kumfor, Fiona; Pijnenburg, Yolande; Rohrer, Jonathan DMarch 1, 2022Not Determined
34997851Create StudySignature laminar distributions of pathology in frontotemporal lobar degeneration.Acta neuropathologicaOhm, Daniel T; Cousins, Katheryn A Q; Xie, Sharon X; Peterson, Claire; McMillan, Corey T; Massimo, Lauren; Raskovsky, Katya; Wolk, David A; Van Deerlin, Vivianna M; Elman, Lauren; Spindler, Meredith; Deik, Andres; Trojanowski, John Q; Lee, Edward B; Grossman, Murray; Irwin, David JMarch 1, 2022Not Determined
34854532Create StudyThe contribution of behavioral features to caregiver burden in FTLD spectrum disorders.Alzheimer''s & dementia : the journal of the Alzheimer''s AssociationSilverman, Hannah E; Ake, Jeannie M; Manoochehri, Masood; Appleby, Brian S; Brushaber, Danielle; Devick, Katrina L; Dickerson, Bradford C; Fields, Julie A; Forsberg, Leah K; Ghoshal, Nupur; Graff-Radford, Neill R; Grossman, Murray; Heuer, Hilary W; Kornak, John; Lapid, Maria I; Litvan, Irene; Mackenzie, Ian R; Mendez, Mario F; Onyike, Chiadi U; Pascual, Belen; Tartaglia, Maria Carmela; Boeve, Bradley F; Boxer, Adam L; Rosen, Howard J; Cosentino, Stephanie; Huey, Edward D; Barker, Megan S; Goldman, Jill S; ALLFTD consortiumSeptember 1, 2022Not Determined
34794500Create StudyRetina tissue validation of optical coherence tomography determined outer nuclear layer loss in FTLD-tau.Acta neuropathologica communicationsKim, Benjamin J; Lee, Vivian; Lee, Edward B; Saludades, Adrienne; Trojanowski, John Q; Dunaief, Joshua L; Grossman, Murray; Irwin, David JNovember 18, 2021Not Determined
34474300Create StudyCommon genetic variation is associated with longitudinal decline and network features in behavioral variant frontotemporal degeneration.Neurobiology of agingMassimo, Lauren; Rennert, Lior; Xie, Sharon X; Olm, Christopher; Bove, Jessica; Van Deerlin, Vivianna; Irwin, David J; Grossman, Murray; McMillan, Corey TDecember 1, 2021Not Determined
34404317Create StudyTonal and orthographic analysis in a Cantonese-speaking individual with nonfluent/agrammatic variant primary progressive aphasia.NeurocaseTee, Boon Lead; Deleon, Jessica; Chen Li Ying, Lorinda Kwan; Miller, Bruce L; Y Lo, Raymond; Europa, Eduardo; Sudarsan, Swati; Grasso, Stephanie; Gorno-Tempini, Maria LuisaFebruary 1, 2022Not Determined
34182153Create StudyDissociating nouns and verbs in temporal and perisylvian networks: Evidence from neurodegenerative diseases.Cortex; a journal devoted to the study of the nervous system and behaviorLukic, Sladjana; Borghesani, Valentina; Weis, Elizabeth; Welch, Ariane; Bogley, Rian; Neuhaus, John; Deleon, Jessica; Miller, Zachary A; Kramer, Joel H; Miller, Bruce L; Dronkers, Nina F; Gorno-Tempini, Maria LSeptember 1, 2021Not Determined
33640853Create StudyAutomated analysis of lexical features in frontotemporal degeneration.Cortex; a journal devoted to the study of the nervous system and behaviorCho, Sunghye; Nevler, Naomi; Ash, Sharon; Shellikeri, Sanjana; Irwin, David J; Massimo, Lauren; Rascovsky, Katya; Olm, Christopher; Grossman, Murray; Liberman, MarkApril 1, 2021Not Determined
33622418Create StudyFrontotemporal lobar degeneration proteinopathies have disparate microscopic patterns of white and grey matter pathology.Acta neuropathologica communicationsGiannini, Lucia A A; Peterson, Claire; Ohm, Daniel; Xie, Sharon X; McMillan, Corey T; Raskovsky, Katya; Massimo, Lauren; Suh, EunRah; Van Deerlin, Vivianna M; Wolk, David A; Trojanowski, John Q; Lee, Edward B; Grossman, Murray; Irwin, David JFebruary 23, 2021Not Determined
33609464Create StudyLessons learned from a progressive supranuclear palsy trial.The Lancet. NeurologyGrossman, MurrayMarch 1, 2021Not Determined
33578418Create Study18F-AV-1451 positron emission tomography in neuropathological substrates of corticobasal syndrome.Brain : a journal of neurologyGoodheart, Anna E; Locascio, Joseph J; Samore, Wesley R; Collins, Jessica A; Brickhouse, Michael; Schultz, Aaron; Touroutoglou, Alexandra; Johnson, Keith A; Frosch, Matthew P; Growdon, John H; Dickerson, Bradford C; Gomperts, Stephen NFebruary 12, 2021Not Determined
33519400Create StudyMore Than Words: Extra-Sylvian Neuroanatomic Networks Support Indirect Speech Act Comprehension and Discourse in Behavioral Variant Frontotemporal Dementia.Frontiers in human neuroscienceHealey, Meghan; Howard, Erica; Ungrady, Molly; Olm, Christopher A; Nevler, Naomi; Irwin, David J; Grossman, MurrayJanuary 1, 2020Not Determined
33447252Create StudyData-Driven, Visual Framework for the Characterization of Aphasias Across Stroke, Post-resective, and Neurodegenerative Disorders Over Time.Frontiers in neurologyFan, Joline M; Gorno-Tempini, Maria Luisa; Dronkers, Nina F; Miller, Bruce L; Berger, Mitchel S; Chang, Edward FJanuary 1, 2020Not Determined
33439761Create StudyLexical and Acoustic Characteristics of Young and Older Healthy Adults.Journal of speech, language, and hearing research : JSLHRCho, Sunghye; Nevler, Naomi; Shellikeri, Sanjana; Parjane, Natalia; Irwin, David J; Ryant, Neville; Ash, Sharon; Cieri, Christopher; Liberman, Mark; Grossman, MurrayFebruary 17, 2021Not Determined
33341654Create StudyCross-sectional and longitudinal medial temporal lobe subregional atrophy patterns in semantic variant primary progressive aphasia.Neurobiology of agingWisse, Laura E M; Ungrady, Molly B; Ittyerah, Ranjit; Lim, Sydney A; Yushkevich, Paul A; Wolk, David A; Irwin, David J; Das, Sandhitsu R; Grossman, MurrayFebruary 1, 2021Not Determined
33226735Create StudyATN incorporating cerebrospinal fluid neurofilament light chain detects frontotemporal lobar degeneration.Alzheimer''s & dementia : the journal of the Alzheimer''s AssociationCousins, Katheryn A Q; Phillips, Jeffrey S; Irwin, David J; Lee, Edward B; Wolk, David A; Shaw, Leslie M; Zetterberg, Henrik; Blennow, Kaj; Burke, Sarah E; Kinney, Nikolas G; Gibbons, Garrett S; McMillan, Corey T; Trojanowski, John Q; Grossman, MurrayMay 1, 2021Not Determined
33173922Create StudyAutomated analysis of lexical features in Frontotemporal Degeneration.medRxiv : the preprint server for health sciencesCho, Sunghye; Nevler, Naomi; Ash, Sharon; Shellikeri, Sanjana; Irwin, David J; Massimo, Lauren; Rascovsky, Katya; Olm, Christopher; Grossman, Murray; Liberman, MarkNovember 4, 2020Not Determined
33012947Create StudyVerbal Semantics and the Left Dorsolateral Anterior Temporal Lobe: A Longitudinal Case of Bilateral Temporal Degeneration.AphasiologyVonk, Jet M J; Borghesani, Valentina; Battistella, Giovanni; Younes, Kyan; DeLeon, Jessica; Welch, Ariane; Hubbard, H Isabel; Miller, Zachary A; Miller, Bruce L; Gorno-Tempini, Maria LuisaJanuary 1, 2020Not Determined
32804255Create StudyDegeneration of the locus coeruleus is a common feature of tauopathies and distinct from TDP-43 proteinopathies in the frontotemporal lobar degeneration spectrum.Acta neuropathologicaOhm, Daniel T; Peterson, Claire; Lobrovich, Rebecca; Cousins, Katheryn A Q; Gibbons, Garrett S; McMillan, Corey T; Wolk, David A; Van Deerlin, Vivianna; Elman, Lauren; Spindler, Meredith; Deik, Andres; Siderowf, Andrew; Trojanowski, John Q; Lee, Edward B; Grossman, Murray; Irwin, David JNovember 1, 2020Not Determined
32798912Create StudyRegional and hemispheric susceptibility of the temporal lobe to FTLD-TDP type C pathology.NeuroImage. ClinicalBorghesani, V; Battistella, G; Mandelli, M L; Welch, A; Weis, E; Younes, K; Neuhaus, J; Grinberg, L T; Seeley, W M; Spina, S; Miller, B; Miller, Z; Gorno-Tempini, M LJanuary 1, 2020Not Determined
32591470Create StudyLongitudinal structural and metabolic changes in frontotemporal dementia.NeurologyBejanin, Alexandre; Tammewar, Gautam; Marx, Gabe; Cobigo, Yann; Iaccarino, Leonardo; Kornak, John; Staffaroni, Adam M; Dickerson, Bradford C; Boeve, Bradley F; Knopman, David S; Gorno-Tempini, Marilu; Miller, Bruce L; Jagust, William J; Boxer, Adam L; Rosen, Howard J; Rabinovici, Gil DJuly 14, 2020Not Determined
32296301Create StudyfMRI-Targeted High-Angular Resolution Diffusion MR Tractography to Identify Functional Language Tracts in Healthy Controls and Glioma Patients.Frontiers in neuroscienceSanvito, Francesco; Caverzasi, Eduardo; Riva, Marco; Jordan, Kesshi M; Blasi, Valeria; Scifo, Paola; Iadanza, Antonella; Crespi, Sofia Allegra; Cirillo, Sara; Casarotti, Alessandra; Leonetti, Antonella; Puglisi, Guglielmo; Grimaldi, Marco; Bello, Lorenzo; Gorno-Tempini, Maria Luisa; Henry, Roland G; Falini, Andrea; Castellano, AntonellaJanuary 1, 2020Not Determined
32180125Create StudyTemporal variant of frontotemporal dementia in C9orf72 repeat expansion carriers: two case studies.Brain imaging and behaviorCaso, Francesca; Agosta, Federica; Magnani, Giuseppe; Cardamone, Rosalinda; Borghesani, Valentina; Miller, Zachary; Riva, Nilo; La Joie, Renaud; Coppola, Giovanni; Grinberg, Lea T; Seeley, William W; Miller, Bruce L; Gorno-Tempini, Maria Luisa; Filippi, MassimoApril 1, 2020Not Determined
32161102Create StudyNeurophysiological signatures in Alzheimer''s disease are distinctly associated with TAU, amyloid-β accumulation, and cognitive decline.Science translational medicineRanasinghe, Kamalini G; Cha, Jungho; Iaccarino, Leonardo; Hinkley, Leighton B; Beagle, Alexander J; Pham, Julie; Jagust, William J; Miller, Bruce L; Rankin, Katherine P; Rabinovici, Gil D; Vossel, Keith A; Nagarajan, Srikantan SMarch 11, 2020Not Determined
32091549Create StudyAssessment of Demographic, Genetic, and Imaging Variables Associated With Brain Resilience and Cognitive Resilience to Pathological Tau in Patients With Alzheimer Disease.JAMA neurologyOssenkoppele, Rik; Lyoo, Chul Hyoung; Jester-Broms, Jonas; Sudre, Carole H; Cho, Hanna; Ryu, Young Hoon; Choi, Jae Yong; Smith, Ruben; Strandberg, Olof; Palmqvist, Sebastian; Kramer, Joel; Boxer, Adam L; Gorno-Tempini, Maria L; Miller, Bruce L; La Joie, Renaud; Rabinovici, Gil D; Hansson, OskarMay 1, 2020Not Determined
31924679Create StudySpeech production differences in English and Italian speakers with nonfluent variant PPA.NeurologyCanu, Elisa; Agosta, Federica; Battistella, Giovanni; Spinelli, Edoardo G; DeLeon, Jessica; Welch, Ariane E; Mandelli, Maria Luisa; Hubbard, H Isabel; Moro, Andrea; Magnani, Giuseppe; Cappa, Stefano F; Miller, Bruce L; Filippi, Massimo; Gorno-Tempini, Maria LuisaMarch 10, 2020Not Determined
31852732Create StudyTask-Free Functional Language Networks: Reproducibility and Clinical Application.The Journal of neuroscience : the official journal of the Society for NeuroscienceBattistella, Giovanni; Borghesani, Valentina; Henry, Maya; Shwe, Wendy; Lauricella, Michael; Miller, Zachary; Deleon, Jessica; Miller, Bruce L; Dronkers, Nina; Brambati, Simona M; Seeley, William W; Mandelli, Maria Luisa; Gorno-Tempini, Maria LuisaFebruary 5, 2020Not Determined
31805382Create StudyState and trait characteristics of anterior insula time-varying functional connectivity.NeuroImagePasquini, Lorenzo; Toller, Gianina; Staffaroni, Adam; Brown, Jesse A; Deng, Jersey; Lee, Alex; Kurcyus, Katarzyna; Shdo, Suzanne M; Allen, Isabel; Sturm, Virginia E; Cobigo, Yann; Borghesani, Valentina; Battistella, Giovanni; Gorno-Tempini, Maria Luisa; Rankin, Katherine P; Kramer, Joel; Rosen, Howard H; Miller, Bruce L; Seeley, William WMarch 1, 2020Not Determined
31672482Create StudyDistinct tau PET patterns in atrophy-defined subtypes of Alzheimer''s disease.Alzheimer''s & dementia : the journal of the Alzheimer''s AssociationOssenkoppele, Rik; Lyoo, Chul Hyoung; Sudre, Carole H; van Westen, Danielle; Cho, Hanna; Ryu, Young Hoon; Choi, Jae Yong; Smith, Ruben; Strandberg, Olof; Palmqvist, Sebastian; Westman, Eric; Tsai, Richard; Kramer, Joel; Boxer, Adam L; Gorno-Tempini, Maria L; La Joie, Renaud; Miller, Bruce L; Rabinovici, Gil D; Hansson, OskarFebruary 1, 2020Not Determined
31648842Create StudyIntervention-specific patterns of cortical function plasticity during auditory encoding in people with schizophrenia.Schizophrenia researchDale, Corby L; Brown, Ethan G; Herman, Alexander B; Hinkley, Leighton B N; Subramaniam, Karuna; Fisher, Melissa; Vinogradov, Sophia; Nagarajan, Srikantan SJanuary 1, 2020Not Determined
31623919Create StudyPatient-Tailored, Connectivity-Based Forecasts of Spreading Brain Atrophy.NeuronBrown, Jesse A; Deng, Jersey; Neuhaus, John; Sible, Isabel J; Sias, Ana C; Lee, Suzee E; Kornak, John; Marx, Gabe A; Karydas, Anna M; Spina, Salvatore; Grinberg, Lea T; Coppola, Giovanni; Geschwind, Dan H; Kramer, Joel H; Gorno-Tempini, Maria Luisa; Miller, Bruce L; Rosen, Howard J; Seeley, William WDecember 4, 2019Not Determined
31542807Create StudyEvidence of corticofugal tau spreading in patients with frontotemporal dementia.Acta neuropathologicaKim, Eun-Joo; Hwang, Ji-Hye L; Gaus, Stephanie E; Nana, Alissa L; Deng, Jersey; Brown, Jesse A; Spina, Salvatore; Lee, Myung Jun; Ramos, Eliana Marisa; Grinberg, Lea T; Kramer, Joel H; Boxer, Adam L; Gorno-Tempini, Maria Luisa; Rosen, Howard J; Miller, Bruce L; Seeley, William WJanuary 1, 2020Not Determined
31511121Create StudySemantic and lexical features of words dissimilarly affected by non-fluent, logopenic, and semantic primary progressive aphasia.Journal of the International Neuropsychological Society : JINSVonk, Jet M J; Jonkers, Roel; Hubbard, H Isabel; Gorno-Tempini, Maria Luisa; Brickman, Adam M; Obler, Loraine KNovember 1, 2019Not Determined
31479444Create StudyThe FACTS model of speech motor control: Fusing state estimation and task-based control.PLoS computational biologyParrell, Benjamin; Ramanarayanan, Vikram; Nagarajan, Srikantan; Houde, JohnSeptember 1, 2019Not Determined
31390290Create StudyTreatment for Word Retrieval in Semantic and Logopenic Variants of Primary Progressive Aphasia: Immediate and Long-Term Outcomes.Journal of speech, language, and hearing research : JSLHRHenry, Maya L; Hubbard, H Isabel; Grasso, Stephanie M; Dial, Heather R; Beeson, Pélagie M; Miller, Bruce L; Gorno-Tempini, Maria LuisaAugust 15, 2019Not Determined
31380750Create StudyRobust Empirical Bayesian Reconstruction of Distributed Sources for Electromagnetic Brain Imaging.IEEE transactions on medical imagingCai, Chang; Diwakar, Mithun; Chen, Dan; Sekihara, Kensuke; Nagarajan, Srikantan SMarch 1, 2020Not Determined
31358572Create StudySpeech and language therapy approaches to managing primary progressive aphasia.Practical neurologyVolkmer, Anna; Rogalski, Emily; Henry, Maya; Taylor-Rubin, Cathleen; Ruggero, Leanne; Khayum, Rebecca; Kindell, Jackie; Gorno-Tempini, Maria Luisa; Warren, Jason D; Rohrer, Jonathan DApril 1, 2020Not Determined
31353851Create StudyInterpersonal prosodic correlation in frontotemporal dementia.Annals of clinical and translational neurologyPressman, Peter S; Ross, Elliott D; Cohen, Kevin B; Chen, Kuan-Hua; Miller, Bruce L; Hunter, Lawrence E; Gorno-Tempini, Maria Luisa; Levenson, Robert WJuly 1, 2019Not Determined
31350420Create StudyGenetic variation across RNA metabolism and cell death gene networks is implicated in the semantic variant of primary progressive aphasia.Scientific reportsBonham, Luke W; Steele, Natasha Z R; Karch, Celeste M; Broce, Iris; Geier, Ethan G; Wen, Natalie L; Momeni, Parastoo; Hardy, John; Miller, Zachary A; Gorno-Tempini, Maria Luisa; Hess, Christopher P; Lewis, Patrick; Miller, Bruce L; Seeley, William W; Manzoni, Claudia; Desikan, Rahul S; Baranzini, Sergio E; Ferrari, Raffaele; Yokoyama, Jennifer S; International FTD-Genomics Consortium (IFGC)July 26, 2019Not Determined
31333403Create StudyEmpiric Methods to Account for Pre-analytical Variability in Digital Histopathology in Frontotemporal Lobar Degeneration.Frontiers in neuroscienceGiannini, Lucia A A; Xie, Sharon X; Peterson, Claire; Zhou, Cecilia; Lee, Edward B; Wolk, David A; Grossman, Murray; Trojanowski, John Q; McMillan, Corey T; Irwin, David JJanuary 1, 2019Not Determined
31250152Create StudyAlzheimer''s disease clinical variants show distinct regional patterns of neurofibrillary tangle accumulation.Acta neuropathologicaPetersen, Cathrine; Nolan, Amber L; de Paula França Resende, Elisa; Miller, Zachary; Ehrenberg, Alexander J; Gorno-Tempini, Maria Luisa; Rosen, Howard J; Kramer, Joel H; Spina, Salvatore; Rabinovici, Gil D; Miller, Bruce L; Seeley, William W; Heinsen, Helmut; Grinberg, Lea TenenholzOctober 1, 2019Not Determined
31146321Create StudyDifferential intrinsic functional connectivity changes in semantic variant primary progressive aphasia.NeuroImage. ClinicalBattistella, Giovanni; Henry, Maya; Gesierich, Benno; Wilson, Stephen M; Borghesani, Valentina; Shwe, Wendy; Miller, Zachary; Deleon, Jessica; Miller, Bruce L; Jovicich, Jorge; Papinutto, Nico; Dronkers, Nina F; Seeley, William W; Mandelli, Maria Luisa; Gorno-Tempini, Maria LuisaJanuary 1, 2019Not Determined
31133977Create StudyClinical Correlates of Alzheimer''s Disease Cerebrospinal Fluid Analytes in Primary Progressive Aphasia.Frontiers in neurologyNorise, Catherine; Ungrady, Molly; Halpin, Amy; Jester, Charles; McMillan, Corey T; Irwin, David J; Cousins, Katheryn A; Grossman, MurrayJanuary 1, 2019Not Determined
31123142Create StudyClinical value of cerebrospinal fluid neurofilament light chain in semantic dementia.Journal of neurology, neurosurgery, and psychiatryMeeter, Lieke H H; Steketee, Rebecca M E; Salkovic, Dina; Vos, Maartje E; Grossman, Murray; McMillan, Corey T; Irwin, David J; Boxer, Adam L; Rojas, Julio C; Olney, Nicholas T; Karydas, Anna; Miller, Bruce L; Pijnenburg, Yolande A L; Barkhof, Frederik; Sánchez-Valle, Raquel; Lladó, Albert; Borrego-Ecija, Sergi; Diehl-Schmid, Janine; Grimmer, Timo; Goldhardt, Oliver; Santillo, Alexander F; Hansson, Oskar; Vestberg, Susanne; Borroni, Barbara; Padovani, Alessandro; Galimberti, Daniela; Scarpini, Elio; Rohrer, Jonathan D; Woollacott, Ione O C; Synofzik, Matthis; Wilke, Carlo; de Mendonca, Alexandre; Vandenberghe, Rik; Benussi, Luisa; Ghidoni, Roberta; Binetti, Giuliano; Niessen, Wiro J; Papma, Janne M; Seelaar, Harro; Jiskoot, Lize C; de Jong, Frank Jan; Donker Kaat, Laura; Del Campo, Marta; Teunissen, Charlotte E; Bron, Esther E; Van den Berg, Esther; Van Swieten, John CSeptember 1, 2019Not Determined
31102021Create StudyFactors that predict diagnostic stability in neurodegenerative dementia.Journal of neurologyPerry, David C; Datta, Samir; Miller, Zachary A; Rankin, Katherine P; Gorno-Tempini, Maria Luisa; Kramer, Joel H; Rosen, Howard J; Seeley, William W; Miller, Bruce LAugust 1, 2019Not Determined
31079065Create StudyGyrification abnormalities in presymptomatic c9orf72 expansion carriers.Journal of neurology, neurosurgery, and psychiatryCaverzasi, Eduardo; Battistella, Giovanni; Chu, Stephanie A; Rosen, Howie; Zanto, Theodore P; Karydas, Anna; Shwe, Wendy; Coppola, Giovanni; Geschwind, Daniel H; Rademakers, Rosa; Miller, Bruce L; Gorno-Tempini, Maria Luisa; Lee, Suzee ESeptember 1, 2019Not Determined
31077982Create StudyTau covariance patterns in Alzheimer''s disease patients match intrinsic connectivity networks in the healthy brain.NeuroImage. ClinicalOssenkoppele, Rik; Iaccarino, Leonardo; Schonhaut, Daniel R; Brown, Jesse A; La Joie, Renaud; O'Neil, James P; Janabi, Mustafa; Baker, Suzanne L; Kramer, Joel H; Gorno-Tempini, Maria-Luisa; Miller, Bruce L; Rosen, Howard J; Seeley, William W; Jagust, William J; Rabinovici, Gil DJanuary 1, 2019Not Determined
31075725Create StudyA longitudinal study of speech production in primary progressive aphasia and behavioral variant frontotemporal dementia.Brain and languageAsh, Sharon; Nevler, Naomi; Phillips, Jeffrey; Irwin, David J; McMillan, Corey T; Rascovsky, Katya; Grossman, MurrayJuly 1, 2019Not Determined
31055171Create StudyNeurocognitive basis of repetition deficits in primary progressive aphasia.Brain and languageLukic, Sladjana; Mandelli, Maria Luisa; Welch, Ariane; Jordan, Kesshi; Shwe, Wendy; Neuhaus, John; Miller, Zachary; Hubbard, H Isabel; Henry, Maya; Miller, Bruce L; Dronkers, Nina F; Gorno-Tempini, Maria LuisaJuly 1, 2019Not Determined
31033382Create StudyAtypical clinical features associated with mixed pathology in a case of non-fluent variant primary progressive aphasia.NeurocaseDe Leon, Jessica; Mandelli, Maria Luisa; Nolan, Amber; Miller, Zachary A; Mead, Christie; Watson, Christa; Welch, Ariane E; Henry, Maya L; Bourakova, Viktoriya; La Joie, Renaud; Bajorek, Lynn P; Grinberg, Lea; Rabinovici, Gil; Miller, Bruce L; Gorno-Tempini, Maria LuisaFebruary 1, 2019Not Determined
31003069Create StudyDopamine receptor D4 (DRD4) polymorphisms with reduced functional potency intensify atrophy in syndrome-specific sites of frontotemporal dementia.NeuroImage. ClinicalButler, P M; Chiong, W; Perry, D C; Miller, Z A; Gennatas, E D; Brown, J A; Pasquini, L; Karydas, A; Dokuru, D; Coppola, G; Sturm, V E; Boxer, A L; Gorno-Tempini, M L; Rosen, H J; Kramer, J H; Miller, B L; Seeley, W WJanuary 1, 2019Not Determined
30952883Create StudyNeural correlates of abnormal auditory feedback processing during speech production in Alzheimer''s disease.Scientific reportsRanasinghe, Kamalini G; Kothare, Hardik; Kort, Naomi; Hinkley, Leighton B; Beagle, Alexander J; Mizuiri, Danielle; Honma, Susanne M; Lee, Richard; Miller, Bruce L; Gorno-Tempini, Maria Luisa; Vossel, Keith A; Houde, John F; Nagarajan, Srikantan SApril 5, 2019Not Determined
30921613Create StudyThalamo-cortical network hyperconnectivity in preclinical progranulin mutation carriers.NeuroImage. ClinicalLee, Suzee E; Sias, Ana C; Kosik, Eena L; Flagan, Taru M; Deng, Jersey; Chu, Stephanie A; Brown, Jesse A; Vidovszky, Anna A; Ramos, Eliana Marisa; Gorno-Tempini, Maria Luisa; Karydas, Anna M; Coppola, Giovanni; Geschwind, Daniel H; Rademakers, Rosa; Boeve, Bradley F; Boxer, Adam L; Rosen, Howard J; Miller, Bruce L; Seeley, William WJanuary 1, 2019Not Determined
30906945Create StudyCortical microstructure in the behavioural variant of frontotemporal dementia: looking beyond atrophy.Brain : a journal of neurologyIllán-Gala, Ignacio; Montal, Victor; Borrego-Écija, Sergi; Vilaplana, Eduard; Pegueroles, Jordi; Alcolea, Daniel; Sánchez-Saudinós, Belén; Clarimón, Jordi; Turón-Sans, Janina; Bargalló, Nuria; González-Ortiz, Sofía; Rosen, Howard J; Gorno-Tempini, Maria Luisa; Miller, Bruce L; Lladó, Albert; Rojas-García, Ricard; Blesa, Rafael; Sánchez-Valle, Raquel; Lleó, Alberto; Fortea, Juan; Catalan Frontotemporal Dementia Initiative (CATFI) and the Frontotemporal Lobar Degeneration Neuroimaging Initiative (FTLDNI)April 1, 2019Not Determined
30883288Create StudyThe Neural Representations of Movement across Semantic Categories.Journal of cognitive neuroscienceBorghesani, Valentina; Riello, Marianna; Gesierich, Benno; Brentari, Valentina; Monti, Alessia; Gorno-Tempini, Maria LuisaJune 1, 2019Not Determined
30880927Create StudyInvestigating the utility of teletherapy in individuals with primary progressive aphasia.Clinical interventions in agingDial, Heather R; Hinshelwood, Holly A; Grasso, Stephanie M; Hubbard, H Isabel; Gorno-Tempini, Maria-Luisa; Henry, Maya LJanuary 1, 2019Not Determined
30851133Create StudyDivergent patterns of TDP-43 and tau pathologies in primary progressive aphasia.Annals of neurologyGiannini, Lucia A A; Xie, Sharon X; McMillan, Corey T; Liang, Mendy; Williams, Andrew; Jester, Charles; Rascovsky, Katya; Wolk, David A; Ash, Sharon; Lee, Edward B; Trojanowski, John Q; Grossman, Murray; Irwin, David JMay 1, 2019Not Determined
30772608Create Study"Looks familiar, but I do not know who she is": The role of the anterior right temporal lobe in famous face recognition.Cortex; a journal devoted to the study of the nervous system and behaviorBorghesani, Valentina; Narvid, Jared; Battistella, Giovanni; Shwe, Wendy; Watson, Christa; Binney, Richard J; Sturm, Virginia; Miller, Zachary; Mandelli, Maria Luisa; Miller, Bruce; Gorno-Tempini, Maria LuisaJune 1, 2019Not Determined
30739198Create StudyGenome-wide analyses as part of the international FTLD-TDP whole-genome sequencing consortium reveals novel disease risk factors and increases support for immune dysfunction in FTLD.Acta neuropathologicaPottier, Cyril; Ren, Yingxue; Perkerson 3rd, Ralph B; Baker, Matt; Jenkins, Gregory D; van Blitterswijk, Marka; DeJesus-Hernandez, Mariely; van Rooij, Jeroen G J; Murray, Melissa E; Christopher, Elizabeth; McDonnell, Shannon K; Fogarty, Zachary; Batzler, Anthony; Tian, Shulan; Vicente, Cristina T; Matchett, Billie; Karydas, Anna M; Hsiung, Ging-Yuek Robin; Seelaar, Harro; Mol, Merel O; Finger, Elizabeth C; Graff, Caroline; Öijerstedt, Linn; Neumann, Manuela; Heutink, Peter; Synofzik, Matthis; Wilke, Carlo; Prudlo, Johannes; Rizzu, Patrizia; Simon-Sanchez, Javier; Edbauer, Dieter; Roeber, Sigrun; Diehl-Schmid, Janine; Evers, Bret M; King, Andrew; Mesulam, M Marsel; Weintraub, Sandra; Geula, Changiz; Bieniek, Kevin F; Petrucelli, Leonard; Ahern, Geoffrey L; Reiman, Eric M; Woodruff, Bryan K; Caselli, Richard J; Huey, Edward D; Farlow, Martin R; Grafman, Jordan; Mead, Simon; Grinberg, Lea T; Spina, Salvatore; Grossman, Murray; Irwin, David J; Lee, Edward B; Suh, EunRan; Snowden, Julie; Mann, David; Ertekin-Taner, Nilufer; Uitti, Ryan J; Wszolek, Zbigniew K; Josephs, Keith A; Parisi, Joseph E; Knopman, David S; Petersen, Ronald C; Hodges, John R; Piguet, Olivier; Geier, Ethan G; Yokoyama, Jennifer S; Rissman, Robert A; Rogaeva, Ekaterina; Keith, Julia; Zinman, Lorne; Tartaglia, Maria Carmela; Cairns, Nigel J; Cruchaga, Carlos; Ghetti, Bernardino; Kofler, Julia; Lopez, Oscar L; Beach, Thomas G; Arzberger, Thomas; Herms, Jochen; Honig, Lawrence S; Vonsattel, Jean Paul; Halliday, Glenda M; Kwok, John B; White 3rd, Charles L; Gearing, Marla; Glass, Jonathan; Rollinson, Sara; Pickering-Brown, Stuart; Rohrer, Jonathan D; Trojanowski, John Q; Van Deerlin, Vivianna; Bigio, Eileen H; Troakes, Claire; Al-Sarraj, Safa; Asmann, Yan; Miller, Bruce L; Graff-Radford, Neill R; Boeve, Bradley F; Seeley, William W; Mackenzie, Ian R A; van Swieten, John C; Dickson, Dennis W; Biernacka, Joanna M; Rademakers, RosaJune 1, 2019Not Determined
30726566Create StudySensitivity and Specificity of Diagnostic Criteria for Progressive Supranuclear Palsy.Movement disorders : official journal of the Movement Disorder SocietyAli, Farwa; Martin, Peter R; Botha, Hugo; Ahlskog, J Eric; Bower, James H; Masumoto, Joseph Y; Maraganore, Demetrius; Hassan, Anhar; Eggers, Scott; Boeve, Bradley F; Knopman, David S; Drubach, Daniel; Petersen, Ronald C; Dunkley, Erika Driver; van Gerpen, Jay; Uitti, Ryan; Whitwell, Jennifer L; Dickson, Dennis W; Josephs, Keith AAugust 1, 2019Not Determined
30704514Create Study18F-flortaucipir (AV-1451) tau PET in frontotemporal dementia syndromes.Alzheimer''s research & therapyTsai, Richard M; Bejanin, Alexandre; Lesman-Segev, Orit; LaJoie, Renaud; Visani, Adrienne; Bourakova, Viktoriya; O'Neil, James P; Janabi, Mustafa; Baker, Suzanne; Lee, Suzee E; Perry, David C; Bajorek, Lynn; Karydas, Anna; Spina, Salvatore; Grinberg, Lea T; Seeley, William W; Ramos, Eliana M; Coppola, Giovanni; Gorno-Tempini, Maria Luisa; Miller, Bruce L; Rosen, Howard J; Jagust, William; Boxer, Adam L; Rabinovici, Gil DJanuary 31, 2019Not Determined
30698757Create StudyLongitudinal multimodal imaging and clinical endpoints for frontotemporal dementia clinical trials.Brain : a journal of neurologyStaffaroni, Adam M; Ljubenkov, Peter A; Kornak, John; Cobigo, Yann; Datta, Samir; Marx, Gabe; Walters, Samantha M; Chiang, Kevin; Olney, Nick; Elahi, Fanny M; Knopman, David S; Dickerson, Bradford C; Boeve, Bradley F; Gorno-Tempini, Maria Luisa; Spina, Salvatore; Grinberg, Lea T; Seeley, William W; Miller, Bruce L; Kramer, Joel H; Boxer, Adam L; Rosen, Howard JFebruary 1, 2019Not Determined
30694922Create StudyPrimary progressive aphasia: a model for neurodegenerative disease.Current opinion in neurologyTee, Boon Lead; Gorno-Tempini, Maria LuisaApril 1, 2019Not Determined
30668155Create StudyPrimary progressive aphasia and the FTD-MND spectrum disorders: clinical, pathological, and neuroimaging correlates.Amyotrophic lateral sclerosis & frontotemporal degenerationVinceti, Giulia; Olney, Nicholas; Mandelli, Maria Luisa; Spina, Salvatore; Hubbard, H Isabel; Santos-Santos, Miguel A; Watson, Christa; Miller, Zachary A; Lomen-Hoerth, Catherine; Nichelli, Paolo; Miller, Bruce L; Grinberg, Lea T; Seeley, William W; Gorno-Tempini, Maria LuisaMay 1, 2019Not Determined
30656179Create StudyValidated automatic speech biomarkers in primary progressive aphasia.Annals of clinical and translational neurologyNevler, Naomi; Ash, Sharon; Irwin, David J; Liberman, Mark; Grossman, MurrayJanuary 1, 2019Not Determined
30599136Create StudyGenetic screen in a large series of patients with primary progressive aphasia.Alzheimer''s & dementia : the journal of the Alzheimer''s AssociationRamos, Eliana Marisa; Dokuru, Deepika Reddy; Van Berlo, Victoria; Wojta, Kevin; Wang, Qing; Huang, Alden Y; Miller, Zachary A; Karydas, Anna M; Bigio, Eileen H; Rogalski, Emily; Weintraub, Sandra; Rader, Benjamin; Miller, Bruce L; Gorno-Tempini, Maria Luisa; Mesulam, Marek-Marsel; Coppola, GiovanniApril 1, 2019Not Determined
30446736Create StudyAmyotrophic lateral sclerosis - a multisystem neurodegenerative disorder.Nature reviews. NeurologyGrossman, MurrayJanuary 1, 2019Not Determined
30326496Create StudyDiscriminative Accuracy of [18F]flortaucipir Positron Emission Tomography for Alzheimer Disease vs Other Neurodegenerative Disorders.JAMAOssenkoppele, Rik; Rabinovici, Gil D; Smith, Ruben; Cho, Hanna; Schöll, Michael; Strandberg, Olof; Palmqvist, Sebastian; Mattsson, Niklas; Janelidze, Shorena; Santillo, Alexander; Ohlsson, Tomas; Jögi, Jonas; Tsai, Richard; La Joie, Renaud; Kramer, Joel; Boxer, Adam L; Gorno-Tempini, Maria L; Miller, Bruce L; Choi, Jae Y; Ryu, Young H; Lyoo, Chul H; Hansson, OskarSeptember 18, 2018Not Determined
30297518Create StudyElevated YKL-40 and low sAPPβ:YKL-40 ratio in antemortem cerebrospinal fluid of patients with pathologically confirmed FTLD.Journal of neurology, neurosurgery, and psychiatryAlcolea, Daniel; Irwin, David J; Illán-Gala, Ignacio; Muñoz, Laia; Clarimón, Jordi; McMillan, Corey T; Fortea, Juan; Blesa, Rafael; Lee, Edward B; Trojanowski, John Q; Grossman, Murray; Lleó, AlbertoFebruary 1, 2019Not Determined
30292076Create StudyAltered topology of the functional speech production network in non-fluent/agrammatic variant of PPA.Cortex; a journal devoted to the study of the nervous system and behaviorMandelli, Maria Luisa; Welch, Ariane E; Vilaplana, Eduard; Watson, Christa; Battistella, Giovanni; Brown, Jesse A; Possin, Katherine L; Hubbard, Honey I; Miller, Zachary A; Henry, Maya L; Marx, Gabe A; Santos-Santos, Miguel A; Bajorek, Lynn P; Fortea, Juan; Boxer, Adam; Rabinovici, Gil; Lee, Suzee; Deleon, Jessica; Rosen, Howard J; Miller, Bruce L; Seeley, William W; Gorno-Tempini, Maria LuisaNovember 1, 2018Not Determined
30255971Create StudyPrevalence of amyloid-β pathology in distinct variants of primary progressive aphasia.Annals of neurologyBergeron, David; Gorno-Tempini, Maria L; Rabinovici, Gil D; Santos-Santos, Miguel A; Seeley, William; Miller, Bruce L; Pijnenburg, Yolande; Keulen, M Antoinette; Groot, Colin; van Berckel, Bart N M; van der Flier, Wiesje M; Scheltens, Philip; Rohrer, Jonathan D; Warren, Jason D; Schott, Jonathan M; Fox, Nick C; Sanchez-Valle, Raquel; Grau-Rivera, Oriol; Gelpi, Ellen; Seelaar, Harro; Papma, Janne M; van Swieten, John C; Hodges, John R; Leyton, Cristian E; Piguet, Olivier; Rogalski, Emily J; Mesulam, Marsel M; Koric, Lejla; Nora, Kristensen; Pariente, Jeéreémie; Dickerson, Bradford; Mackenzie, Ian R; Hsiung, Ging-Yuek R; Belliard, Serge; Irwin, David J; Wolk, David A; Grossman, Murray; Jones, Matthew; Harris, Jennifer; Mann, David; Snowden, Julie S; Chrem-Mendez, Patricio; Calandri, Ismael L; Amengual, Alejandra A; Miguet-Alfonsi, Carole; Magnin, Eloi; Magnani, Giuseppe; Santangelo, Roberto; Deramecourt, Vincent; Pasquier, Florence; Mattsson, Niklas; Nilsson, Christer; Hansson, Oskar; Keith, Julia; Masellis, Mario; Black, Sandra E; Matías-Guiu, Jordi A; Cabrera-Martin, María-Nieves; Paquet, Claire; Dumurgier, Julien; Teichmann, Marc; Sarazin, Marie; Bottlaender, Michel; Dubois, Bruno; Rowe, Christopher C; Villemagne, Victor L; Vandenberghe, Rik; Granadillo, Elias; Teng, Edmond; Mendez, Mario; Meyer, Philipp T; Frings, Lars; Lleó, Alberto; Blesa, Rafael; Fortea, Juan; Seo, Sang Won; Diehl-Schmid, Janine; Grimmer, Timo; Frederiksen, Kristian Steen; Sánchez-Juan, Pascual; Chételat, Gaël; Jansen, Willemijn; Bouchard, Rémi W; Laforce, Robert Jr; Visser, Pieter Jelle; Ossenkoppele, RikNovember 1, 2018Not Determined
30112427Create StudyLinguistic Aspects of Primary Progressive Aphasia.Annual review of linguisticsGrossman, MurrayJanuary 1, 2018Not Determined
30104745Create StudyMultimodal imaging in RBD - present and future.Nature reviews. NeurologyBoeve, Bradley F; Kantarci, KejalOctober 1, 2018Not Determined
30059734Create StudyHierarchical multiscale Bayesian algorithm for robust MEG/EEG source reconstruction.NeuroImageCai, Chang; Sekihara, Kensuke; Nagarajan, Srikantan SDecember 1, 2018Not Determined
29911176Create StudyDifferences in Hearing Acuity among "Normal-Hearing" Young Adults Modulate the Neural Basis for Speech Comprehension.eNeuroLee, Yune S; Wingfield, Arthur; Min, Nam-Eun; Kotloff, Ethan; Grossman, Murray; Peelle, Jonathan EMay 1, 2018Not Determined
29876267Create StudyAbnormal age-related cortical folding and neurite morphology in children with developmental dyslexia.NeuroImage. ClinicalCaverzasi, Eduardo; Mandelli, Maria Luisa; Hoeft, Fumiko; Watson, Christa; Meyer, Marita; Allen, Isabel E; Papinutto, Nico; Wang, Cheng; Gandini Wheeler-Kingshott, Claudia A M; Marco, Elysa J; Mukherjee, Pratik; Miller, Zachary A; Miller, Bruce L; Hendren, Robert; Shapiro, Kevin A; Gorno-Tempini, Maria LuisaJanuary 1, 2018Not Determined
29851876Create StudyPrimary Progressive Aphasia and Stroke Aphasia.Continuum (Minneapolis, Minn.)Grossman, Murray; Irwin, David JJune 1, 2018Not Determined
29630699Create StudyPrevalence of Mathematical and Visuospatial Learning Disabilities in Patients With Posterior Cortical Atrophy.JAMA neurologyMiller, Zachary A; Rosenberg, Lynne; Santos-Santos, Miguel A; Stephens, Melanie; Allen, Isabel E; Hubbard, H Isabel; Cantwell, Averill; Mandelli, Maria Luisa; Grinberg, Lea T; Seeley, William W; Miller, Bruce L; Rabinovici, Gil D; Gorno-Tempini, Maria LuisaJune 1, 2018Not Determined
29053874Create StudyTau pathology and neurodegeneration contribute to cognitive impairment in Alzheimer''s disease.Brain : a journal of neurologyBejanin, Alexandre; Schonhaut, Daniel R; La Joie, Renaud; Kramer, Joel H; Baker, Suzanne L; Sosa, Natasha; Ayakta, Nagehan; Cantwell, Averill; Janabi, Mustafa; Lauriola, Mariella; O'Neil, James P; Gorno-Tempini, Maria L; Miller, Zachary A; Rosen, Howard J; Miller, Bruce L; Jagust, William J; Rabinovici, Gil DDecember 1, 2017Not Determined
29053860Create StudyClinicopathological correlations in behavioural variant frontotemporal dementia.Brain : a journal of neurologyPerry, David C; Brown, Jesse A; Possin, Katherine L; Datta, Samir; Trujillo, Andrew; Radke, Anneliese; Karydas, Anna; Kornak, John; Sias, Ana C; Rabinovici, Gil D; Gorno-Tempini, Maria Luisa; Boxer, Adam L; De May, Mary; Rankin, Katherine P; Sturm, Virginia E; Lee, Suzee E; Matthews, Brandy R; Kao, Aimee W; Vossel, Keith A; Tartaglia, Maria Carmela; Miller, Zachary A; Seo, Sang Won; Sidhu, Manu; Gaus, Stephanie E; Nana, Alissa L; Vargas, Jose Norberto S; Hwang, Ji-Hye L; Ossenkoppele, Rik; Brown, Alainna B; Huang, Eric J; Coppola, Giovanni; Rosen, Howard J; Geschwind, Daniel; Trojanowski, John Q; Grinberg, Lea T; Kramer, Joel H; Miller, Bruce L; Seeley, William WDecember 1, 2017Not Determined
29039275Create StudyVisuospatial Functioning in the Primary Progressive Aphasias.Journal of the International Neuropsychological Society : JINSWatson, Christa L; Possin, Katherine; Allen, I Elaine; Hubbard, H Isabel; Meyer, Marita; Welch, Ariane E; Rabinovici, Gil D; Rosen, Howard; Rankin, Katherine P; Miller, Zachary; Santos-Santos, Miguel A; Kramer, Joel H; Miller, Bruce L; Gorno-Tempini, Maria LuisaMarch 1, 2018Not Determined
28969381Create StudyDistinct spatiotemporal patterns of neuronal functional connectivity in primary progressive aphasia variants.Brain : a journal of neurologyRanasinghe, Kamalini G; Hinkley, Leighton B; Beagle, Alexander J; Mizuiri, Danielle; Honma, Susanne M; Welch, Ariane E; Hubbard, Isabel; Mandelli, Maria Luisa; Miller, Zachary A; Garrett, Coleman; La, Alice; Boxer, Adam L; Houde, John F; Miller, Bruce L; Vossel, Keith A; Gorno-Tempini, Maria Luisa; Nagarajan, Srikantan SOctober 1, 2017Not Determined
28887373Create StudyOptical coherence tomography identifies outer retina thinning in frontotemporal degeneration.NeurologyKim, Benjamin J; Irwin, David J; Song, Delu; Daniel, Ebenezer; Leveque, Jennifer D; Raquib, Aaishah R; Pan, Wei; Ying, Gui-Shuang; Aleman, Tomas S; Dunaief, Joshua L; Grossman, MurrayOctober 10, 2017Not Determined
28314241Create StudyCharacterizing Articulation in Apraxic Speech Using Real-Time Magnetic Resonance Imaging.Journal of speech, language, and hearing research : JSLHRHagedorn, Christina; Proctor, Michael; Goldstein, Louis; Wilson, Stephen M; Miller, Bruce; Gorno-Tempini, Maria Luisa; Narayanan, Shrikanth SApril 14, 2017Not Determined
28304307Create StudyLogopenic Aphasia due to a Strategic Stroke: New Evidence from a Single Case.Journal of Alzheimer''s disease : JADRiancho, Javier; Pozueta, Ana; Santos, Miguel; Lage, Carmen; Carril, José M; Banzo, Ignacio; Martínez-Rodriguez, Isabel; Gorno-Tempini, Marilu; Sánchez-Juan, PascualJanuary 1, 2017Not Determined
28235777Create StudyObserving conversational laughter in frontotemporal dementia.Journal of neurology, neurosurgery, and psychiatryPressman, Peter S; Simpson, Michaela; Gola, Kelly; Shdo, Suzanne M; Spinelli, Edoardo G; Miller, Bruce L; Gorno-Tempini, Maria Luisa; Rankin, Katherine; Levenson, Robert WMay 1, 2017Not Determined
28133816Create StudyTypical and atypical pathology in primary progressive aphasia variants.Annals of neurologySpinelli, Edoardo G; Mandelli, Maria Luisa; Miller, Zachary A; Santos-Santos, Miguel A; Wilson, Stephen M; Agosta, Federica; Grinberg, Lea T; Huang, Eric J; Trojanowski, John Q; Meyer, Marita; Henry, Maya L; Comi, Giancarlo; Rabinovici, Gil; Rosen, Howard J; Filippi, Massimo; Miller, Bruce L; Seeley, William W; Gorno-Tempini, Maria LuisaMarch 1, 2017Not Determined
28131013Create StudyAbnormal vocal behavior predicts executive and memory deficits in Alzheimer''s disease.Neurobiology of agingRanasinghe, Kamalini G; Gill, Jeevit S; Kothare, Hardik; Beagle, Alexander J; Mizuiri, Danielle; Honma, Susanne M; Gorno-Tempini, Maria Luisa; Miller, Bruce L; Vossel, Keith A; Nagarajan, Srikantan S; Houde, John FApril 1, 2017Not Determined
27770478Create StudyDeriving frequency-dependent spatial patterns in MEG-derived resting state sensorimotor network: A novel multiband ICA technique.Human brain mappingNugent, Allison C; Luber, Bruce; Carver, Frederick W; Robinson, Stephen E; Coppola, Richard; Zarate Jr, Carlos AFebruary 1, 2017Not Determined
27554388Create StudyVariable disruption of a syntactic processing network in primary progressive aphasia.Brain : a journal of neurologyWilson, Stephen M; DeMarco, Andrew T; Henry, Maya L; Gesierich, Benno; Babiak, Miranda; Miller, Bruce L; Gorno-Tempini, Maria LuisaNovember 1, 2016Not Determined
27497488Create StudyHealthy brain connectivity predicts atrophy progression in non-fluent variant of primary progressive aphasia.Brain : a journal of neurologyMandelli, Maria Luisa; Vilaplana, Eduard; Brown, Jesse A; Hubbard, H Isabel; Binney, Richard J; Attygalle, Suneth; Santos-Santos, Miguel A; Miller, Zachary A; Pakvasa, Mikhail; Henry, Maya L; Rosen, Howard J; Henry, Roland G; Rabinovici, Gil D; Miller, Bruce L; Seeley, William W; Gorno-Tempini, Maria LuisaOctober 1, 2016Not Determined
27429218Create StudyDistinct Subtypes of Behavioral Variant Frontotemporal Dementia Based on Patterns of Network Degeneration.JAMA neurologyRanasinghe, Kamalini G; Rankin, Katherine P; Pressman, Peter S; Perry, David C; Lobach, Iryna V; Seeley, William W; Coppola, Giovanni; Karydas, Anna M; Grinberg, Lea T; Shany-Ur, Tal; Lee, Suzee E; Rabinovici, Gil D; Rosen, Howard J; Gorno-Tempini, Maria Luisa; Boxer, Adam L; Miller, Zachary A; Chiong, Winston; DeMay, Mary; Kramer, Joel H; Possin, Katherine L; Sturm, Virginia E; Bettcher, Brianne M; Neylan, Michael; Zackey, Diana D; Nguyen, Lauren A; Ketelle, Robin; Block, Nikolas; Wu, Teresa Q; Dallich, Alison; Russek, Natanya; Caplan, Alyssa; Geschwind, Daniel H; Vossel, Keith A; Miller, Bruce LSeptember 1, 2016Not Determined
27412866Create StudyNeuropsychiatric subsyndromes and brain metabolic network dysfunctions in early onset Alzheimer''s disease.Human brain mappingBallarini, Tommaso; Iaccarino, Leonardo; Magnani, Giuseppe; Ayakta, Nagehan; Miller, Bruce L; Jagust, William J; Gorno-Tempini, Maria Luisa; Rabinovici, Gil D; Perani, DanielaDecember 1, 2016Not Determined
27389800Create StudyReading words and other people: A comparison of exception word, familiar face and affect processing in the left and right temporal variants of primary progressive aphasia.Cortex; a journal devoted to the study of the nervous system and behaviorBinney, Richard J; Henry, Maya L; Babiak, Miranda; Pressman, Peter S; Santos-Santos, Miguel A; Narvid, Jared; Mandelli, Maria Luisa; Strain, Paul J; Miller, Bruce L; Rankin, Katherine P; Rosen, Howard J; Gorno-Tempini, Maria LuisaSeptember 1, 2016Not Determined
helpcenter.collection.publications-tab

NDA Help Center

Collection - Publications

The number of Publications is displayed in parentheses next to the tab name. Clicking on any of the Publication Titles will open the Publication in a new internet browsing tab.

Collection Owners, Program Officers, and users with Submission or Administrative Privileges for the Collection may mark a publication as either Relevant or Not Relevant in the Status column.

Frequently Asked Questions

  • How can I determine if a publication is relevant?
    Publications are considered relevant to a collection when the data shared is directly related to the project or collection.
  • Where does the NDA get the publications?
    PubMed, an online library containing journals, articles, and medical research. Sponsored by NiH and National Library of Medicine (NLM).

Glossary

  • Create Study
    A link to the Create an NDA Study page that can be clicked to start creating an NDA Study with information such as the title, journal and authors automatically populated.
  • Not Determined Publication
    Indicates that the publication has not yet been reviewed and/or marked as Relevant or Not Relevant so it has not been determined whether an NDA Study is expected.
  • Not Relevant Publication
    A publication that is not based on data related to the aims of the grant/project associated with the Collection or not based on any data such as a review article and, therefore, an NDA Study is not expected to be created.
  • PubMed
    PubMed provides citation information for biomedical and life sciences publications and is managed by the U.S. National Institutes of Health's National Library of Medicine.
  • PubMed ID
    The PUBMed ID is the unique ID number for the publication as recorded in the PubMed database.
  • Relevant Publication
    A publication that is based on data related to the aims of the grant/project associated with the Collection and, therefore, an NDA Study is expected to be created.

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
No records found.
Data Expected List: Mandatory Data Structures

These data structures are mandatory for your NDA Collection. Please update the Targeted Enrollment number to accurately represent the number of subjects you expect to submit for the entire study.

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Research Subject and Pedigree info icon
106/15/2021
0
Approved

You can use "Add New Data Expected" to add exsiting structures and create your project's list. However, this is also the method you can use to request new structures be created for your project. When adding the Data Expected item, if the structure already exists you can locate it and specify your dates and enrollment. To add a new structure and request it be defined in the Data Dictionary, select Upload Definition and attach the definition or material needed to create it, including manual, codebooks, forms, etc. If you have multiple files, please upload a zipped archive containing them all.

Expected dates should be selected based on the standard Data Sharing Regimen and are restricted to within date ranges based on the project start and end dates.

Data Expected List: Data Structures per Research Aims

These data structures are specific to your research aims and should list all data structures in which data will be collected and submitted for this NDA Collection. Please update the Targeted Enrollment number to accurately represent the number of subjects you expect to submit for the entire study.

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Trail Making Test (Child and Adult) info icon
30008/31/2022
0
Approved
Picture Sequence Memory info icon
10008/31/2022
0
Approved
Cognition Composite Scores info icon
10008/31/2022
0
Approved
Pattern Comparison Processing Speed info icon
10008/31/2022
0
Approved
List Sorting Working Memory Test info icon
10008/31/2022
0
Approved
Dimensional Change Card Sort Test info icon
10008/31/2022
0
Approved
Flanker Task info icon
10008/31/2022
0
Approved
NIH Toolbox Oral Reading Recognition Test info icon
10008/31/2022
0
Approved
Picture Vocabulary Test info icon
10008/31/2022
0
Approved
Digit Span Memory Task info icon
30008/31/2022
0
Approved
Montreal Cognitive Assessment info icon
30008/31/2022
0
Approved
MINT info icon
30008/31/2022
0
Approved
CDR info icon
30008/31/2022
0
Approved
Benson Complex Figure (Immediate and Delayed) info icon
30008/31/2022
0
Approved
Verbal Fluency - F and L info icon
30008/31/2022
0
Approved
Craft Story info icon
30008/31/2022
0
Approved
Category Fluency info icon
30008/31/2022
0
Approved
FTLD Module info icon
30008/31/2022
0
Approved
Structure not yet defined
No Status history for this Data Expected has been recorded yet
helpcenter.collection.data-expected-tab

NDA Help Center

Collection - Data Expected

The Data Expected tab displays the list of all data that NDA expects to receive in association with the Collection as defined by the contributing researcher, as well as the dates for the expected initial upload of the data, and when it is first expected to be shared, or with the research community. Above the primary table of Data Expected, any publications determined to be relevant to the data within the Collection are also displayed - members of the contributing research group can use these to define NDA Studies, connecting those papers to underlying data in NDA.

The tab is used both as a reference for those accessing shared data, providing information on what is expected and when it will be shared, and as the primary tracking mechanism for contributing projects. It is used by both contributing primary researchers, secondary researchers, and NIH Program and Grants Management staff.

Contributing researchers just getting started on their project will need to define this list by adding all of the items they are collecting under their grant and setting their schedule according to the NDA Data Sharing Regimen. If you fall into this category, you can begin by clicking "Add New Data Expected" and selecting which data structures you will be using, saving the page after each change, or requesting new structures by adding and naming a new item, providing any materials NDA Data Dictionary Curators can use to help define your structure. For more information see the tutorial on creating Data Expected.

If you are a contributing researcher creating this list for the first time, or making changes to the list as your project progress, please note the following:

  • Although items you add to the list and changes you make are displayed, they are not committed to the system until you Save the entire page using the "Save"" button at the bottom of your screen. Please Save after every change to ensure none of your work is lost.
  • If you attempt to add a new structure, the title you provide must be unique - if another structure exists with the same name your change will fail.
  • Adding a new structure to this list is the only way to request the creation of a new Data Dictionary definition.

Frequently Asked Questions

  • What is an NDA Data Structure?
    An NDA Data Structure is comprised of multiple Data Elements to make up an electronic definition of an assessment, measure, questionnaire, etc will have a corresponding Data Structure.
  • What is the NDA Data Dictionary?
    The NDA Data Dictionary is comprised of electronic definitions known as Data Structures.

Glossary

  • Analyzed Data
    Data specific to the primary aims of the research being conducted (e.g. outcome measures, other dependent variables, observations, laboratory results, analyzed images, volumetric data, etc.) including processed images.
  • Data Item
    Items listed on the Data Expected list in the Collection which may be an individual and discrete Data Structure, Data Structure Category, or Data Structure Group.
  • Data Structure
    A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure
  • Data Structure Category
    An NDA term describing the affiliation of a Data Structure to a Category, which may be disease/disorder or diagnosis related (Depression, ADHD, Psychosis), specific to data type (MRI, eye tracking, omics), or type of data (physical exam, IQ).
  • Data Structure Group
    A Data Item listed on the Data Expected tab of a Collection that indicates a group of Data Structures (e.g., ADOS or SCID) for which data may be submitted instead of a specific Data Structure identified by version, module, edition, etc. For example, the ADOS Data Structure Category includes every ADOS Data Structure such as ADOS Module 1, ADOS Module 2, ADOS Module 1 - 2nd Edition, etc. The SCID Data Structure Group includes every SCID Data Structure such as SCID Mania, SCID V Mania, SCID PTSD, SCID-V Diagnosis, and more.
  • Evaluated Data
    A new Data Structure category, Evaluated Data is analyzed data resulting from the use of computational pipelines in the Cloud and can be uploaded directly back to a miNDAR database. Evaluated Data is expected to be listed as a Data Item in the Collection's Data Expected Tab.
  • Imaging Data
    Imaging+ is an NDA term which encompasses all imaging related data including, but not limited to, images (DTI, MRI, PET, Structural, Spectroscopy, etc.) as well as neurosignal data (EEG, fMRI, MEG, EGG, eye tracking, etc.) and Evaluated Data.
  • Initial Share Date
    Initial Submission and Initial Share dates should be populated according to the NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data will be shared with authorized users upon publication (via an NDA Study) or 1-2 years after the grant end date specified on the first Notice of Award, as defined in the applicable Data Sharing Terms and Conditions.
  • Initial Submission Date
    Initial Submission and Initial Share dates should be populated according to these NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data for all subjects is not expected on the Initial Submission Date and modifications may be made as necessary based on the project's conduct.
  • Research Subject and Pedigree
    An NDA created Data Structure used to convey basic information about the subject such as demographics, pedigree (links family GUIDs), diagnosis/phenotype, and sample location that are critical to allow for easier querying of shared data.
  • Submission Cycle
    The NDA has two Submission Cycles per year - January 15 and July 15.
  • Submission Exemption
    An interface to notify NDA that data may not be submitted during the upcoming/current submission cycle.

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Associated Studies

Studies that have been defined using data from a Collection are important criteria to determine the value of data shared. The number of subjects column displays the counts from this Collection that are included in a Study, out of the total number of subjects in that study. The Data Use column represents whether or not the study is a primary analysis of the data or a secondary analysis. State indicates whether the study is private or shared with the research community.

Study NameAbstractCollection/Study SubjectsData UsageState
No records found.
helpcenter.collection.associated-studies-tab

NDA Help Center

Collection - Associated Studies

Clicking on the Study Title will open the study details in a new internet browser tab. The Abstract is available for viewing, providing the background explanation of the study, as provided by the Collection Owner.

Primary v. Secondary Analysis: The Data Usage column will have one of these two choices. An associated study that is listed as being used for Primary Analysis indicates at least some and potentially all of the data used was originally collected by the creator of the NDA Study. Secondary Analysis indicates the Study owner was not involved in the collection of data, and may be used as supporting data.

Private v. Shared State: Studies that remain private indicate the associated study is only available to users who are able to access the collection. A shared study is accessible to the general public.

Frequently Asked Questions

  • How do I associate a study to my collection?
    Studies are associated to the Collection automatically when the data is defined in the Study.

Glossary

  • Associated Studies Tab
    A tab in a Collection that lists the NDA Studies that have been created using data from that Collection including both Primary and Secondary Analysis NDA Studies.
Edit