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

Please select an experiment type below

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
Collection - Add Experiment
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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Heterogeneity in Autism Spectrum Disorders: Biological Mechanisms, Trajectories, and Treatment Response
Susan Bookheimer 
This application seeks to renew our highly productive and interdisciplinary UCLA Autism Center of Excellence ACE III. Over the last decade, our group has made significant advances in the field, identifying risk genes, candidate brain based biomarkers of treatment response and early risk markers of Autism Spectrum Disorder ASD beginning in the first few weeks of life. We developed new interventions for toddlers with social communication delays, identified an intervention with the most robust effects on repetitive behaviors to date, and we showed how genetic risk influences brain structure and function in ASD. Most unique and impactful is our Centers integration of genetics, early biomarkers and behavioral assays with intervention In parallel with growing awareness in the field, we recognize the profound clinical and genetic heterogeneity in ASD, which poses a significant challenge to identifying diagnostic biomarkers and to developing effective interventions that target individual profiles. In order to move from a one size fits all to a precision medicine approach, we must better understand the biological and clinical basis of this heterogeneity. Our ACE application takes a multidisciplinary, integrative approach to study the relationship between genetic, neural and phenotypic heterogeneity in ASD, to determine whether this heterogeneity reflects unique biological mechanisms underlying autism, and to identify predictors of developmental trajectories and treatment outcome. In four interacting projects, we will focus on three areas of heterogeneity that our work suggests has unique neural, genetic and behavioral signatures sensorimotor processing social attention motivation, and social communication language. Project I aims to determine how differences in genetic risk for autism familial risk, 22q11 deletion, and Tuberous Sclerosis Complex (TSC) affect early brain development, neuroimaging and EEG biomarkers in the first year of life and identifying predictors of ASD diagnosis at age 3 P. II examines heterogeneity in treatment response using a SMART design, 3-phase adaptive treatment intervention for very young children at risk for ASD P. III uses MRI in youth with ASD to determine how behavioral phenotypes and genetic risk differentially affect brain activation, structural and functional connectivity. P. IV conducts a proof-of-mechanism pharmacological trial aimed to increase social interest and social reward responsivity with the dopamine precursor L-DOPA in adolescents and young adults enrolled in a social skills intervention.. All projects examine these target phenotypes using at least one biological marker, in addition to standardized and observational tests. This will allow us to integrate biomarkers, genetics and behavior across projects and across ages. A well-established core infrastructure centralizes diagnostics, genetics, imaging, and EEG acquisition, with a common database built for cross project and core collaboration, and outstanding, specialized statistical support. A new Dissemination, Outreach and Education Core centralizes recruitment, and strengthens our community ties and educational program to maximize scientific and community impact.
NIMH Data Archive
10/17/2017
Autism Centers of Excellence (ACE)
Enrolling
Shared
No
$10,439,783.00
179
Loading Chart...
NIH - Extramural None

QA-notification.txt Other Quality Assurance Notification Qualified Researchers

P50HD055784-11 Heterogeneity in Autism Spectrum Disorders: Biological Mechanisms Trajectories and Treatment Response 09/07/2017 07/31/2023 1062 158 UNIVERSITY OF CALIFORNIA LOS ANGELES $10,439,783.00

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/nda/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
321Omni2.5-806/10/2015ApprovedOmics
1108P1_language12/12/2018ApprovedfMRI
1109P1-nativelang12/12/2018ApprovedfMRI
1112P1_resting8min12/13/2018ApprovedfMRI
1146Jeste UCLA ACE III EEG (4 Paradigms)01/03/2019ApprovedEEG
1311Jeste Ace III EEG (4 Paradigms) Dataset 207/12/2019ApprovedEEG
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.

ACE Subject Physical Exam Clinical Assessments 3
Adult Behavior Check List Clinical Assessments 2
Adult Self Report Clinical Assessments 2
Anticipatory and Consummatory Interpersonal Pleasure Scale-Adolescent Clinical Assessments 4
Autism Diagnostic Interview, Revised (ADI-R) Clinical Assessments 3
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 1 Clinical Assessments 27
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 2 Clinical Assessments 6
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 3 Clinical Assessments 1
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 4 Clinical Assessments 2
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Toddler Module Clinical Assessments 37
Autism Observation Scale for Infants Clinical Assessments 42
Clinical Global Impression (CGI) Clinical Assessments 4
Demographics form UCLA Clinical Assessments 110
Infant Medical History Questionnaire Clinical Assessments 54
M-CHAT Clinical Assessments 8
MacArthur-Bates CDI - Words and Gestures Form Clinical Assessments 30
MacArthur-Bates CDI - Words and Sentences Form Clinical Assessments 3
Mullen Scales of Early Learning Clinical Assessments 104
Parent Concerns Questionaire Clinical Assessments 55
Reading the Mind in the Eyes Task (RMET) Clinical Assessments 4
Research Subject Clinical Assessments 158
SRS-2. Adult, Preschool and School Age Clinical Assessments 61
Side Effects Clinical Assessments 5
Social Communication Interaction Test Clinical Assessments 4
Social Communication Questionnaire (SCQ) - Current Form Clinical Assessments 11
Social Communication Questionnaire (SCQ) - Lifetime Clinical Assessments 12
Temporal Experience Pleasure Scale Clinical Assessments 4
The Positive and Negative Affect Schedule Adult Version Clinical Assessments 4
Vineland 3 Clinical Assessments 48
Vital Signs Clinical Assessments 5
WASI-2 Clinical Assessments 3
Youth Self Report Clinical Assessments 1
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
35678946Create StudyPredictors of Attrition in a Randomized Trial of a Social Communication Intervention for Infant-Toddlers at Risk for Autism.Journal of autism and developmental disordersSterrett, Kyle; Magaña, Maira Tafolla; Gulsrud, Amanda; Paparella, Tanya; Kasari, ConnieJune 9, 2022Not Determined
35437928Create StudySuper responders: Predicting language gains from JASPER among limited language children with autism spectrum disorder.Autism research : official journal of the International Society for Autism ResearchPanganiban, Jonathan; Kasari, ConnieAugust 1, 2022Not Determined
34882790Create StudyAtypical cerebellar functional connectivity at 9 months of age predicts delayed socio-communicative profiles in infants at high and low risk for autism.Journal of child psychology and psychiatry, and allied disciplinesOkada, Nana J; Liu, Janelle; Tsang, Tawny; Nosco, Erin; McDonald, Nicole M; Cummings, Kaitlin K; Jung, Jiwon; Patterson, Genevieve; Bookheimer, Susan Y; Green, Shulamite A; Jeste, Shafali S; Dapretto, MirellaSeptember 1, 2022Not Determined
34807457Create StudyStudying the early emergence of autism: what is the goal of baby siblings research?Developmental medicine and child neurologyMcDonald, Nicole MMay 1, 2022Not Determined
34797038Create StudyParenting stress in caregiver-mediated interventions for toddlers with autism: An application of quantile regression mixed models.Autism research : official journal of the International Society for Autism ResearchSchlink, Andrew; Williams, Justin; Pizzano, Maria; Gulsrud, Amanda; Kasari, ConnieFebruary 1, 2022Not Determined
34158222Create StudyDrug development for Autism Spectrum Disorder (ASD): Progress, challenges, and future directions.European neuropsychopharmacology : the journal of the European College of NeuropsychopharmacologyMcCracken, James T; Anagnostou, Evdokia; Arango, Celso; Dawson, Geraldine; Farchione, Tiffany; Mantua, Valentina; McPartland, James; Murphy, Declan; Pandina, Gahan; Veenstra-VanderWeele, Jeremy; ISCTM/ECNP ASD Working GroupJuly 1, 2021Not Determined
34109620Create StudyEarly concerns in parents of infants at risk for autism.Developmental medicine and child neurologyTran, Amanda T; Del Rosario, Mithi; Nosco, Erin; Li, Yihao; Senturk, Damla; Mcdonald, Nicole M; Wilson, Rujuta B; Dapretto, Mirella; Jeste, Shafali SDecember 1, 2021Not Determined
34098753Create StudyWhat are the odds? Predicting the likelihood of a negative episode in a sample of toddlers with autism spectrum disorder.Autism : the international journal of research and practiceDimachkie Nunnally, Amanda; Sterrett, Kyle; Gulsrud, Amanda; Kasari, ConnieNovember 1, 2021Not Determined
34050248Create StudyTranscriptome analysis of MBD5-associated neurodevelopmental disorder (MAND) neural progenitor cells reveals dysregulation of autism-associated genes.Scientific reportsMullegama, Sureni V; Klein, Steven D; Williams, Stephen R; Innis, Jeffrey W; Probst, Frank J; Haldeman-Englert, Chad; Martinez-Agosto, Julian A; Yang, Ying; Tian, Yuchen; Elsea, Sarah H; Ezashi, ToshihikoMay 28, 2021Not Determined
33866373Create StudyAltered Thalamocortical Connectivity in 6-Week-Old Infants at High Familial Risk for Autism Spectrum Disorder.Cerebral cortex (New York, N.Y. : 1991)Nair, Aarti; Jalal, Rhideeta; Liu, Janelle; Tsang, Tawny; McDonald, Nicole M; Jackson, Lisa; Ponting, Carolyn; Jeste, Shafali S; Bookheimer, Susan Y; Dapretto, MirellaJuly 29, 2021Not Determined
33860866Create StudyBeyond Baby Siblings-Expanding the Definition of "High-Risk Infants" in Autism Research.Current psychiatry reportsMcDonald, Nicole M; Jeste, Shafali SApril 16, 2021Not Determined
33587311Create StudyAssociations between physiological and neural measures of sensory reactivity in youth with autism.Journal of child psychology and psychiatry, and allied disciplinesJung, Jiwon; Zbozinek, Tomislav D; Cummings, Kaitlin K; Wilhelm, Frank H; Dapretto, Mirella; Craske, Michelle G; Bookheimer, Susan Y; Green, Shulamite AOctober 1, 2021Not Determined
33436538Create StudySensory over-responsivity is related to GABAergic inhibition in thalamocortical circuits.Translational psychiatryWood, Emily T; Cummings, Kaitlin K; Jung, Jiwon; Patterson, Genevieve; Okada, Nana; Guo, Jia; O'Neill, Joseph; Dapretto, Mirella; Bookheimer, Susan Y; Green, Shulamite AJanuary 12, 2021Not Determined
33389145Create Study5q35 duplication presents with psychiatric and undergrowth phenotypes mediated by NSD1 overexpression and mTOR signaling downregulation.Human geneticsQuintero-Rivera, Fabiola; Eno, Celeste C; Sutanto, Christine; Jones, Kelly L; Nowaczyk, Małgorzata J M; Wong, Derek; Earl, Dawn; Mirzaa, Ghayda; Beck, Anita; Martinez-Agosto, Julian AApril 1, 2021Not Determined
33368921Create StudyLack of neural evidence for implicit language learning in 9-month-old infants at high risk for autism.Developmental scienceLiu, Janelle; Tsang, Tawny; Ponting, Carolyn; Jackson, Lisa; Jeste, Shafali S; Bookheimer, Susan Y; Dapretto, MirellaJuly 1, 2021Not Determined
33043498Create StudyFunctional connectivity during language processing in 3-month-old infants at familial risk for autism spectrum disorder.The European journal of neuroscienceTran, Xuan A; McDonald, Nicole; Dickinson, Abigail; Scheffler, Aaron; Frohlich, Joel; Marin, Andrew; Kure Liu, Christopher; Nosco, Erin; Şentürk, Damla; Dapretto, Mirella; Spurling Jeste, ShafaliMarch 1, 2021Not Determined
32860348Create StudySex Differences in Salience Network Connectivity and its Relationship to Sensory Over-Responsivity in Youth with Autism Spectrum Disorder.Autism research : official journal of the International Society for Autism ResearchCummings, Kaitlin K; Lawrence, Katherine E; Hernandez, Leanna M; Wood, Emily T; Bookheimer, Susan Y; Dapretto, Mirella; Green, Shulamite ASeptember 2020Not Determined
32798139Create StudyMultivariate Neural Connectivity Patterns in Early Infancy Predict Later Autism Symptoms.Biological psychiatry. Cognitive neuroscience and neuroimagingDickinson, Abigail; Daniel, Manjari; Marin, Andrew; Gaonkar, Bilwaj; Dapretto, Mirella; McDonald, Nicole M; Jeste, ShafaliJanuary 1, 2021Not Determined
32658762Create StudyEmerging atypicalities in functional connectivity of language-related networks in young infants at high familial risk for ASD.Developmental cognitive neuroscienceLiu, Janelle; Okada, Nana J; Cummings, Kaitlin K; Jung, Jiwon; Patterson, Genevieve; Bookheimer, Susan Y; Jeste, Shafali S; Dapretto, MirellaOctober 1, 2020Not Determined
32634676Create StudyFunctional genomics links genetic origins to pathophysiology in neurodegenerative and neuropsychiatric disease.Current opinion in genetics & developmentWamsley, Brie; Geschwind, Daniel HDecember 1, 2020Not Determined
32215919Create StudyElectrophysiological signatures of visual statistical learning in 3-month-old infants at familial and low risk for autism spectrum disorder.Developmental psychobiologyMarin, Andrew; Hutman, Ted; Ponting, Carolyn; McDonald, Nicole M; Carver, Leslie; Baker, Elizabeth; Daniel, Manjari; Dickinson, Abigail; Dapretto, Mirella; Johnson, Scott P; Jeste, Shafali SSeptember 1, 2020Not Determined
31696785Create StudyPositive social feedback alters emotional ratings and reward valuation of neutral faces.Quarterly journal of experimental psychology (2006)Young, Katherine S; Hasratian, Anni M; Parsons, Christine E; Zinbarg, Richard E; Nusslock, Robin; Bookheimer, Susan Y; Craske, Michelle GJuly 2020Not Determined
31654560Create StudyBehavioral characterization of dup15q syndrome: Toward meaningful endpoints for clinical trials.American journal of medical genetics. Part ADiStefano, Charlotte; Wilson, Rujuta B; Hyde, Carly; Cook, Edwin H; Thibert, Ronald L; Reiter, Lawrence T; Vogel-Farley, Vanessa; Hipp, Joerg; Jeste, ShafaliJanuary 2020Not Determined
31639285Create StudyMutations in the sonic hedgehog pathway cause macrocephaly-associated conditions due to crosstalk to the PI3K/AKT/mTOR pathway.American journal of medical genetics. Part AKlein, Steven D; Nguyen, Dzung C; Bhakta, Viraj; Wong, Derek; Chang, Vivian Y; Davidson, Tom B; Martinez-Agosto, Julian ADecember 2019Not Determined
31589284Create StudyDevelopmental Trajectories of Infants With Multiplex Family Risk for Autism: A Baby Siblings Research Consortium Study.JAMA neurologyMcDonald, Nicole M; Senturk, Damla; Scheffler, Aaron; Brian, Jessica A; Carver, Leslie J; Charman, Tony; Chawarska, Katarzyna; Curtin, Suzanne; Hertz-Piccioto, Irva; Jones, Emily J H; Klin, Ami; Landa, Rebecca; Messinger, Daniel S; Ozonoff, Sally; Stone, Wendy L; Tager-Flusberg, Helen; Webb, Sara Jane; Young, Gregory; Zwaigenbaum, Lonnie; Jeste, Shafali SJanuary 2020Not Determined
31585457Create StudyDefining and distinguishing infant behavioral states using acoustic cry analysis: is colic painful?Pediatric researchParga, Joanna J; Lewin, Sharon; Lewis, Juanita; Montoya-Williams, Diana; Alwan, Abeer; Shaul, Brianna; Han, Carol; Bookheimer, Susan Y; Eyer, Sherry; Dapretto, Mirella; Zeltzer, Lonnie; Dunlap, Lauren; Nookala, Usha; Sun, Daniel; Dang, Bianca H; Anderson, Ariana EFebruary 2020Not Determined
31500805Create StudySynaptic and Gene Regulatory Mechanisms in Schizophrenia, Autism, and 22q11.2 Copy Number Variant-Mediated Risk for Neuropsychiatric Disorders.Biological psychiatryForsyth, Jennifer K; Nachun, Daniel; Gandal, Michael J; Geschwind, Daniel H; Anderson, Ariana E; Coppola, Giovanni; Bearden, Carrie EJanuary 2020Not Determined
31462477Create StudyMulticentre, randomised waitlist control trial investigating a parent-assisted social skills group programme for adolescents with brain injuries: protocol for the friends project.BMJ openGilmore, Rose; Sakzewski, Leanne; Ziviani, Jenny; Mcintyre, Sarah; Smithers Sheedy, Hayley; Hilton, Nicola; Williams, Tracey; Quinn, Kirsten; Sarandrea, Anne Marie; Laugeson, Elizabeth; Chatfield, MarkAugust 2019Not Determined
31419043Create StudyEarly patterns of functional brain development associated with autism spectrum disorder in tuberous sclerosis complex.Autism research : official journal of the International Society for Autism ResearchDickinson, Abigail; Varcin, Kandice J; Sahin, Mustafa; Nelson 3rd, Charles A; Jeste, Shafali SDecember 2019Not Determined
31312421Create StudyMechanisms underlying the EEG biomarker in Dup15q syndrome.Molecular autismFrohlich J, Reiter LT, Saravanapandian V, Distefano C, Huberty S, Hyde C, Chamberlain S, Bearden CE, Golshani P, Irimia A, Olsen RW, Hipp JF, Jeste SSJanuary 2019Not Determined
31241851Create StudyDevelopmental screening and early intervention in a childcare setting for young children at risk for autism and other developmental delays: A feasibility trial.Autism research : official journal of the International Society for Autism ResearchGulsrud, Amanda; Carr, Themba; Williams, Justin; Panganiban, Jonathan; Jones, Felica; Kimbrough, Jackie; Shih, Wendy; Kasari, ConnieSeptember 1, 2019Not Determined
31232238Create StudyHotspot Mutations in DICER1 Causing GLOW Syndrome-Associated Macrocephaly via Modulation of Specific microRNA Populations Result in the Activation of PI3K/ATK/mTOR Signaling.MicroRNA (Shariqah, United Arab Emirates)Klein, Steven D; Martinez-Agosto, Julian AJanuary 1, 2020Not Determined
31230465Create StudyDistinct Patterns of Neural Habituation and Generalization in Children and Adolescents With Autism With Low and High Sensory Overresponsivity.The American journal of psychiatryGreen, Shulamite A; Hernandez, Leanna; Lawrence, Katherine E; Liu, Janelle; Tsang, Tawny; Yeargin, Jillian; Cummings, Kaitlin; Laugeson, Elizabeth; Dapretto, Mirella; Bookheimer, Susan YDecember 2019Not Determined
31223334Create StudyEEG Data Collection in Children with ASD: The Role of State in Data Quality and Spectral Power.Research in autism spectrum disordersDiStefano, Charlotte; Dickinson, Abigail; Baker, Elizabeth; Jeste, Shafali SpurlingJanuary 2019Not Determined
31163191Create StudyMethodological considerations in the use of Noldus EthoVision XT video tracking of children with autism in multi-site studies.Biological psychologySabatos-DeVito, Maura; Murias, Michael; Dawson, Geraldine; Howell, Toni; Yuan, Andrew; Marsan, Samuel; Bernier, Raphael A; Brandt, Cynthia A; Chawarska, Katarzyna; Dzuira, James D; Faja, Susan; Jeste, Shafali S; Naples, Adam; Nelson, Charles A; Shic, Frederick; Sugar, Catherine A; Webb, Sara J; McPartland, James C; Autism Biomarkers Consortium for Clinical TrialsSeptember 2019Not Determined
31150625Create StudyHuman Gut Microbiota from Autism Spectrum Disorder Promote Behavioral Symptoms in Mice.CellSharon, Gil; Cruz, Nikki Jamie; Kang, Dae-Wook; Gandal, Michael J; Wang, Bo; Kim, Young-Mo; Zink, Erika M; Casey, Cameron P; Taylor, Bryn C; Lane, Christianne J; Bramer, Lisa M; Isern, Nancy G; Hoyt, David W; Noecker, Cecilia; Sweredoski, Michael J; Moradian, Annie; Borenstein, Elhanan; Jansson, Janet K; Knight, Rob; Metz, Thomas O; Lois, Carlos; Geschwind, Daniel H; Krajmalnik-Brown, Rosa; Mazmanian, Sarkis KMay 2019Not Determined
31141683Create StudyReduced Prefrontal Synaptic Connectivity and Disturbed Oscillatory Population Dynamics in the CNTNAP2 Model of Autism.Cell reportsLazaro, Maria T; Taxidis, Jiannis; Shuman, Tristan; Bachmutsky, Iris; Ikrar, Taruna; Santos, Rommel; Marcello, G Mark; Mylavarapu, Apoorva; Chandra, Swasty; Foreman, Allison; Goli, Rachna; Tran, Duy; Sharma, Nikhil; Azhdam, Michelle; Dong, Hongmei; Choe, Katrina Y; Peñagarikano, Olga; Masmanidis, Sotiris C; Rácz, Bence; Xu, Xiangmin; Geschwind, Daniel H; Golshani, PeymanMay 2019Not Determined
30974225Create StudyERP evidence of semantic processing in children with ASD.Developmental cognitive neuroscienceDistefano C, Senturk D, Jeste SSApril 2019Not Determined
30901538Create StudyDefining the Genetic, Genomic, Cellular, and Diagnostic Architectures of Psychiatric Disorders.CellSullivan PF, Geschwind DHMarch 2019Not Determined
30632286Create StudySocial complexity and the early social environment affect visual social attention to faces.Autism research : official journal of the International Society for Autism ResearchTsang, Tawny; Johnson, Scott; Jeste, Shafali; Dapretto, MirellaMarch 2019Not Determined
30628809Create StudyEarly motor abilities in infants at heightened versus low risk for ASD: A Baby Siblings Research Consortium (BSRC) study.Journal of abnormal psychologyIverson, Jana M; Shic, Frederick; Wall, Carla A; Chawarska, Katarzyna; Curtin, Suzanne; Estes, Annette; Gardner, Judith M; Hutman, Ted; Landa, Rebecca J; Levin, April R; Libertus, Klaus; Messinger, Daniel S; Nelson, Charles A; Ozonoff, Sally; Sacrey, Lori-Ann R; Sheperd, Kelly; Stone, Wendy L; Tager-Flusberg, Helen B; Wolff, Jason J; Yirmiya, Nurit; Young, Gregory SJanuary 2019Not Determined
30542259Create StudyImbalance of Functional Connectivity and Temporal Entropy in Resting-State Networks in Autism Spectrum Disorder: A Machine Learning Approach.Frontiers in neuroscienceSmith, Robert X; Jann, Kay; Dapretto, Mirella; Wang, Danny J JJanuary 2018Not Determined
30541423Create StudyWhat's missing in autism spectrum disorder motor assessments?Journal of neurodevelopmental disordersWilson RB, Mccracken JT, Rinehart NJ, Jeste SSDecember 2018Not Determined
30506566Create StudyThe dysregulation profile in preschoolers with and without a family history of autism spectrum disorder.Journal of child psychology and psychiatry, and allied disciplinesMiller, Meghan; Iosif, Ana-Maria; Young, Gregory S; Bell, Laura J; Schwichtenberg, A J; Hutman, Ted; Ozonoff, SallyMay 2019Not Determined
30447054Create StudyMutations in STAG2 cause an X-linked cohesinopathy associated with undergrowth, developmental delay, and dysmorphia: Expanding the phenotype in males.Molecular genetics & genomic medicineMullegama, Sureni V; Klein, Steven D; Signer, Rebecca H; UCLA Clinical Genomics Center; Vilain, Eric; Martinez-Agosto, Julian AFebruary 2019Not Determined
30375176Create StudyAtypical longitudinal development of functional connectivity in adolescents with autism spectrum disorder.Autism research : official journal of the International Society for Autism ResearchLawrence, Katherine E; Hernandez, Leanna M; Bookheimer, Susan Y; Dapretto, MirellaJanuary 2019Not Determined
30372577Create StudyAltered lateralization of dorsal language tracts in 6-week-old infants at risk for autism.Developmental scienceLiu, Janelle; Tsang, Tawny; Jackson, Lisa; Ponting, Carolyn; Jeste, Shafali S; Bookheimer, Susan Y; Dapretto, MirellaMay 2019Not Determined
30272146Create StudyThe Neuroanatomy of Autism Spectrum Disorder Symptomatology in 22q11.2 Deletion Syndrome.Cerebral cortex (New York, N.Y. : 1991)Gudbrandsen, M; Daly, E; Murphy, C M; Wichers, R H; Stoencheva, V; Perry, E; Andrews, D; Blackmore, C E; Rogdaki, M; Kushan, L; Bearden, C E; Murphy, D G M; Craig, M C; Ecker, CJuly 2019Not Determined
30084925Create StudyHybrid principal components analysis for region-referenced longitudinal functional EEG data.Biostatistics (Oxford, England)Scheffler, Aaron; Telesca, Donatello; Li, Qian; Sugar, Catherine A; Distefano, Charlotte; Jeste, Shafali; Şentürk, DamlaJanuary 2020Not Determined
29963691Create StudyOrganized physical activity programs: improving motor and non-motor symptoms in neurodevelopmental disorders.Developmental medicine and child neurologyRinehart, Nicole J; Jeste, Shafali; Wilson, Rujuta BSeptember 1, 2018Not Determined
29961422Create StudyRecurrence quantification analysis of resting state EEG signals in autism spectrum disorder - a systematic methodological exploration of technical and demographic confounders in the search for biomarkers.BMC medicineHeunis T, Aldrich C, Peters JM, Jeste SS, Sahin M, Scheffer C, De Vries PJJuly 2018Not Determined
29689375Create StudyInterhemispheric alpha-band hypoconnectivity in children with autism spectrum disorder.Behavioural brain researchDickinson, Abigail; DiStefano, Charlotte; Lin, Yin-Ying; Scheffler, Aaron Wolfe; Senturk, Damla; Jeste, Shafali SpurlingAugust 2018Not Determined
29540864Create StudyA randomized, placebo-controlled trial of extended-release guanfacine in children with autism spectrum disorder and ADHD symptoms: an analysis of secondary outcome measures.Neuropsychopharmacology : official publication of the American College of NeuropsychopharmacologyPolitte LC, Scahill L, Figueroa J, Mccracken JT, King B, Mcdougle CJJuly 2018Not Determined
29493557Create StudyMotor development and delay: advances in assessment of motor skills in autism spectrum disorders.Current opinion in neurologyWilson, Rujuta B; Enticott, Peter G; Rinehart, Nicole JApril 1, 2018Not Determined
29461424Create StudyDevelopmental disorders special issue: biomarkers and targeted therapeutics.Current opinion in neurologyJeste SSApril 2018Not Determined
28900778Create StudyEarly Gesture and Vocabulary Development in Infant Siblings of Children with Autism Spectrum Disorder.Journal of autism and developmental disordersIverson, Jana M; Northrup, Jessie B; Leezenbaum, Nina B; Parladé, Meaghan V; Koterba, Erin A; West, Kelsey LJanuary 2018Not Determined
28700096Create StudyPeak alpha frequency is a neural marker of cognitive function across the autism spectrum.The European journal of neuroscienceDickinson, Abigail; DiStefano, Charlotte; Senturk, Damla; Jeste, Shafali SpurlingMarch 2018Not Determined
28284787Create StudySensory over-responsivity and social cognition in ASD: Effects of aversive sensory stimuli and attentional modulation on neural responses to social cues.Developmental cognitive neuroscienceGreen, Shulamite A; Hernandez, Leanna M; Bowman, Hilary C; Bookheimer, Susan Y; Dapretto, MirellaJanuary 2018Not 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.

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
8701/15/2019
158
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
Mullen Scales of Early Learning info icon
27501/15/2019
104
Approved
ADOS info icon
27501/15/2019
61
Approved
ADI-R info icon
12001/15/2019
3
Approved
Reading the Mind in the Eyes info icon
5601/15/2019
4
Approved
Positive and Negative Affect Schedule info icon
5601/15/2019
4
Approved
Medical History info icon
27501/15/2019
54
Approved
Social Responsiveness Scale (SRS) info icon
21101/15/2019
61
Approved
Wechsler Abbreviated Scale of Intelligence (WASI) info icon
5601/15/2019
3
Approved
Genetic Test info icon
5601/15/2019
0
Approved
Social Communication Questionnaire (SCQ) info icon
15501/15/2019
23
Approved
Demographics info icon
4901/15/2019
110
Approved
Child Behavior Checklist (CBCL) info icon
5601/15/2019
0
Approved
M-CHAT info icon
15501/15/2019
8
Approved
Clinical Global Impression (CGI) info icon
5601/15/2019
4
Approved
Autism Observation Scale for Infants (AOSI) info icon
15501/15/2019
42
Approved
Vital Signs Assessment info icon
5601/15/2019
5
Approved
Early Social Communication Scales (ESCS) info icon
15501/15/2019
0
Approved
Parent Concerns Questionaire info icon
15501/15/2019
55
Approved
MacArthur Bates Communicative Development Inventory info icon
15501/15/2019
33
Approved
Physical Exam info icon
5601/15/2019
3
Approved
Adult Behavior Checklist (ABCL) info icon
5601/15/2019
2
Approved
Side Effects info icon
5601/15/2019
5
Approved
Youth Self Report info icon
5601/15/2019
1
Approved
Vineland (Parent and Caregiver) info icon
33101/15/2019
48
Approved
Temporal Experience Pleasure Scale info icon
5601/15/2019
4
Approved
Adult Self Report info icon
5601/15/2019
2
Approved
Imaging (Structural, fMRI, DTI, PET, microscopy) info icon
26001/15/2019
0
Approved
Anticipatory and Consummatory Interpersonal Pleasure Scale-Adolescent info icon
5601/15/2019
4
Approved
EEG info icon
27501/15/2019
0
Approved
Social Communication Interaction Test (SCIT) info icon
5601/15/2019
4
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
Examining the validity of the use of ratio IQs in psychological assessments IQ tests are amongst the most used psychological assessments, both in research and clinical settings. For participants who cannot complete IQ tests normed for their age, ratio IQ scores (RIQ) are routinely computed and used as a proxy of IQ, especially in large research databases to avoid missing data points. However, because it has never been scientifically validated, this practice is questionable. In the era of big data, it is important to examine the validity of this widely used practice. In this paper, we use the case of autism to examine the differences between standard full-scale IQ (FSIQ) and RIQ. Data was extracted from four databases in which ages, FSIQ scores and subtests raw scores were available for autistic participants between 2 and 17 years old. The IQ tests included were the MSEL (N=12033), DAS-II early years (N=1270), DAS-II school age (N=2848), WISC-IV (N=471) and WISC-V (N=129). RIQs were computed for each participant as well as the discrepancy (DSC) between RIQ and FSIQ. We performed two linear regressions to respectively assess the effect of FSIQ and of age on the DSC for each IQ test, followed by additional analyses comparing age subgroups as well as FSIQ subgroups on DSC. Participants at the extremes of the FSIQ distribution tended to have a greater DSC than participants with average FSIQ. Furthermore, age significantly predicted the DSC, with RIQ superior to FSIQ for younger participants while the opposite was found for older participants. These results question the validity of this widely used alternative scoring method, especially for individuals at the extremes of the normal distribution, with whom RIQs are most often employed.104/17423Secondary AnalysisShared
Characterizing Auditory Hyperreactivity in AutismObjective: To answer the following research questions: 1) What is the prevalence of auditory hyper-reactivity in ASD? 2) Does auditory hyper-reactivity severity change with age? and 3) What are the most common auditory stimuli reported to be bothersome? Research Design: Primarily descriptive secondary data analysis. Methods: Type of data: Questionnaire items regarding auditory hyper-reactivity will be filtered from: Autism Diagnostic Interview-Revised, Sensory Profile (all forms), Sensory Over-Responsivity Scale, and Sensory Experiences Questionnaire in addition to demographics (i.e., age, race, ethnicity, diagnoses). Analysis Plan: Descriptive statistics, tables and figures will be used to summarize the prevalence and severity of auditory hyper-reactivity by age. Linear regression modeling will be used to evaluate changes in auditory hyper-reactivity by age. If data is available for control subjects, statistical analyses will be conducted for means comparison (ASD vs. non-ASD). 3/7001Secondary AnalysisPrivate
Brain-based sex differences in autism spectrum disorder across the lifespan: A systematic review of structural MRI, fMRI, and DTI findingsFemales with autism spectrum disorder (ASD) have been long overlooked in neuroscience research, but emerging evidence suggests they show distinct phenotypic trajectories and age-related brain differences. Sex-related biological factors (e.g., hormones, genes) may play a role in ASD etiology and have been shown to influence neurodevelopmental trajectories. Thus, a lifespan approach is warranted to understand brain-based sex differences in ASD. This systematic review on MRI-based sex differences in ASD was conducted to elucidate variations across the lifespan and inform biomarker discovery of ASD in females. We identified articles through two database searches. Fifty studies met criteria and underwent integrative review. We found that regions expressing replicable sex-by-diagnosis differences across studies overlapped with regions showing sex differences in neurotypical (NT) cohorts, in particular regions showing NT male>female volumes. Furthermore, studies investigating age-related brain differences across a broad age-span suggest distinct neurodevelopmental patterns in females with ASD. Qualitative comparison across youth and adult studies also supported this hypothesis. However, many studies collapsed across age, which may mask differences. Furthermore, accumulating evidence supports the female protective effect in ASD, although only one study examined brain circuits implicated in “protection.” When synthesized with the broader literature, brain-based sex differences in ASD may come from various sources, including genetic and endocrine processes involved in brain “masculinization” and “feminization” across early development, puberty, and other lifespan windows of hormonal transition. Furthermore, sex-related biology may interact with peripheral processes, in particular the stress axis and brain arousal system, to produce distinct neurodevelopmental patterns in males and females with ASD. Future research on neuroimaging-based sex differences in ASD would benefit from a lifespan approach in well-controlled and multivariate studies. Possible relationships between behavior, sex hormones, and brain development in ASD remain largely unexamined.30/759Secondary AnalysisShared
Word Learning and Word FeaturesVocabulary composition and word-learning biases are closely interrelated in typical development. Learning new words involves attending to certain properties to facilitate word learning. Such word-learning biases are influenced by perceptually and conceptually salient word features, including high imageability, concreteness, and iconicity. This study examined the association of vocabulary knowledge and word features in young children with ASD (n = 280) and typically developing (TD) toddlers (n = 1,054). Secondary analyses were conducted using data from the National Database for Autism Research and the Wordbank database. Expressive vocabulary was measured using the MacArthur-Bates Communicative Development Inventory. Although the trajectories for concreteness, iconicity, and imageability are similar between children with ASD and TD toddlers, divergences were observed. Differences in imageability are seen early but resolve to a common trajectory; differences in iconicity are small but consistent; and differences in concreteness only emerge after both groups reach a simultaneous peak, before converging again. This study reports unique information about the nonlinear growth patterns associated with each word feature for and distinctions in these growth patterns between the groups.1/280Primary AnalysisShared
Semantic Network ModelingAlthough it is well documented that children with ASD are slower to develop their lexicons, we still have a limited understanding of the structure of early lexical knowledge in children with ASD. The current study uses network analysis to examine the structure of semantic knowledge, which may provide insight into the learning processes that influence early word learning.1/200Secondary AnalysisShared
* Data not on individual level
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