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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1 Numbers reported are subjects by age
New Trial
New Project

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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Your Collection is now in Data Analysis phase and exempt from biannual submissions. Analyzed data is still expected prior to publication or no later than the project end date.

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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Kansas Intellectual and Developmental Disabilities Research Center
John Colombo 
The Kansas Intellectual and Developmental Disabilities Center KIDDRC supports rigorous and high-impact basic and applied research within themes that are relevant to the etiology, identification, prevention, and treatment of intellectual and developmental disabilities IDD. The Center is organized around projects that fall into four basic themes 1 Language, Communication Disorders, and Cognition, 2 Risk, Intervention, and Prevention, 3 The Neurobiology of IDD, and 4 Cellular and Molecular Biology of Early Development. To achieve its mission, the KIDDRC seeks to develop new interdisciplinary research initiatives relevant to the Centers mission by bringing together scientists across the various sites of the Kansas Center as well as promoting collaboration with researchers at other institutions. It supports existing and new projects with cost-effective, scientifically generative, state-of-the-art core services, resources, and facilities that directly enhance the quality, quantity, and impact of science produced by center investigators and their collaborators, and to provide highly efficient, cost-effective systems for planning, developing, managing, coordinating, and disseminating research activities associated with the center. The KIDDRC proposes to operate five Cores in support of its projects. An Administrative Core coordinates and integrates services and functions across the three physical locations of the KIDDRC in Lawrence and Kansas City and provides scientific leadership and governance mechanisms to ensure that scientific cores are current and efficiently run. A Clinical Translational Core provides KIDDRC investigators with several tools for enhancing translational research, addressed broadly by facilitating contact with individuals with IDD for research. A Preclinical Models Core facilitates translational applications by assisting in the development of cellular and organismal models of IDD. This is done by providing infrastructure and resources needed to create and characterize laboratory models of IDD and by extending KIDDRCs prior capabilities for analyzing behavior, anatomy, physiology, and gene expression. This latter goal includes cutting-edge genome editing technologies to aid in generating cellular models using patient derived cells. A Clinical Outcomes Biobehavioral Technology Core provides high-quality, cost-effective support to KIDDRC research programs requiring quantitative measurement of human neurobehavioral and behavioral outcomes, as well as biological correlates. The CBC includes tools for the generating, collecting, automating, and validating such measures. The fifth core is a Research Design and Analysis Core RDAC, which supports the analysis of data from both preclinical and clinical research through state-of-the-art statistical and bioinformatics methods. Finally, a Research Component housed within the KIDDRC seeks to evaluate the efficacy of multimodal intervention for language in a group of children with autism and minimal verbal skills by comparing results from an experimental intervention to a treatment-as-usual condition, and compare two intensities of the multimodal intervention.
NIMH Data Archive
09/29/2016
Funding Completed
Close Out
Shared
No
$5,096,186.00
45
Loading Chart...
NIH - Extramural None


U54HD090216-01 Kansas Intellectual and Developmental Disabilities Research Center 09/22/2016 05/31/2021 560 45 UNIVERSITY OF KANSAS LAWRENCE $5,096,186.00

helpcenter.collection.general-tab

NDA Help Center

Collection - General

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

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

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

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

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

Blinded Clinical Trial Status:

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

Funding Source

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

Supporting Documentation

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

Grant Information

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

Clinical Trials

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

Frequently Asked Questions

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

Glossary

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

NDA Help Center

Collection - Experiments

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

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

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

Frequently Asked Questions

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

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

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

Glossary

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

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

Shared Data

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

Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 1 Clinical Assessments 22
Communication Complexity Scale Clinical Assessments 34
MacArthur-Bates CDI - Words and Gestures Form Clinical Assessments 25
Mullen Scales of Early Learning Clinical Assessments 34
Peabody Picture Vocabulary Test, Fourth Edition-Form A Clinical Assessments 45
Research Subject Clinical Assessments 45
Vineland 3 Clinical Assessments 26
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
36343228Create StudySpinal neuropeptide Y Y1 receptor-expressing neurons are a pharmacotherapeutic target for the alleviation of neuropathic pain.Proceedings of the National Academy of Sciences of the United States of AmericaNelson, Tyler S; Sinha, Ghanshyam P; Santos, Diogo F S; Jukkola, Peter; Prasoon, Pranav; Winter, Michelle K; McCarson, Ken E; Smith, Bret N; Taylor, Bradley KNovember 16, 2022Not Determined
36282915Create StudyLoss of the repressor REST affects progesterone receptor function and promotes uterine leiomyoma pathogenesis.Proceedings of the National Academy of Sciences of the United States of AmericaCloud, Ashley S; Koohestani, Faezeh; McWilliams, Michelle M; Ganeshkumar, Sornakala; Gunewardena, Sumedha; Graham, Amanda; Nothnick, Warren B; Chennathukuzhi, Vargheese MNovember 1, 2022Not Determined
36095328Create StudyThe Influence of Communication Sample Length on Reliability and Convergent Validity of Vocal Measures Derived From the Communication Complexity Scale.Journal of speech, language, and hearing research : JSLHRMcDaniel, Jena; Brady, Nancy COctober 17, 2022Not Determined
36064754Create StudyStability and volatility shape the gut bacteriome and Kazachstania slooffiae dynamics in preweaning, nursery and adult pigs.Scientific reportsFeehan, Brandi; Ran, Qinghong; Dorman, Victoria; Rumback, Kourtney; Pogranichniy, Sophia; Ward, Kaitlyn; Goodband, Robert; Niederwerder, Megan C; Summers, Katie Lynn; Lee, Sonny T MSeptember 5, 2022Not Determined
35850385Create StudyGenX induces fibroinflammatory gene expression in primary human hepatocytes.ToxicologyRobarts, Dakota R; Venneman, Kaitlyn K; Gunewardena, Sumedha; Apte, UdayanJuly 1, 2022Not Determined
35772768Create StudyHeat-induced increases in body temperature in lactating dairy cows: impact on the cumulus and granulosa cell transcriptome of the periovulatory follicle.Journal of animal scienceKlabnik, Jessica L; Christenson, Lane K; Gunewardena, Sumedha S A; Pohler, Ky G; Rispoli, Louisa A; Payton, Rebecca R; Moorey, Sarah E; Neal Schrick, F; Edwards, J LannettJuly 1, 2022Not Determined
35647662Create StudyKinetic Characterization of the Immune Response to Methicillin-Resistant Staphylococcus aureus Subcutaneous Skin Infection.Infection and immunityRidder, Miranda J; McReynolds, Aubrey K G; Dai, Hongyan; Pritchard, Michele T; Markiewicz, Mary A; Bose, Jeffrey LJuly 21, 2022Not Determined
35644283Create StudyTtc21b deficiency attenuates autosomal dominant polycystic kidney disease in a kidney tubular- and maturation-dependent manner.Kidney internationalWang, Wei; Silva, Luciane M; Wang, Henry H; Kavanaugh, Matthew A; Pottorf, Tana S; Allard, Bailey A; Jacobs, Damon T; Dong, Rouchen; Cornelius, Joseph T; Chaturvedi, Aakriti; Swenson-Fields, Katherine I; Fields, Timothy A; Pritchard, Michele T; Sharma, Madhulika; Slawson, Chad; Wallace, Darren P; Calvet, James P; Tran, Pamela VSeptember 1, 2022Not Determined
35642939Create StudyRecovered Hepatocytes Promote Macrophage Apoptosis Through CXCR4 After Acetaminophen-Induced Liver Injury in Mice.Toxicological sciences : an official journal of the Society of ToxicologyNguyen, Nga T; Umbaugh, David S; Huang, Eileen L; Adelusi, Olamide B; Sanchez Guerrero, Giselle; Ramachandran, Anup; Jaeschke, HartmutJuly 28, 2022Not Determined
35609590Create StudyMicroRNA Profiling in the Perilymph of Cochlear Implant Patients: Identifying Markers that Correlate to Audiological Outcomes.Journal of the American Academy of AudiologyWichova, Helena; Shew, Matthew; Nelson-Brantley, Jennifer; Warnecke, Athanasia; Prentiss, Sandra; Staecker, HinrichNovember 1, 2021Not Determined
35177031Create StudyLoss of REST in breast cancer promotes tumor progression through estrogen sensitization, MMP24 and CEMIP overexpression.BMC cancerCloud, Ashley S; Vargheese, Aditya M; Gunewardena, Sumedha; Shimak, Raeann M; Ganeshkumar, Sornakala; Kumaraswamy, Easwari; Jensen, Roy A; Chennathukuzhi, Vargheese MFebruary 17, 2022Not Determined
35093590Create StudyRegulation of Liver Regeneration by Hepatocyte O-GlcNAcylation in Mice.Cellular and molecular gastroenterology and hepatologyRobarts, Dakota R; McGreal, Steven R; Umbaugh, David S; Parkes, Wendena S; Kotulkar, Manasi; Abernathy, Sarah; Lee, Norman; Jaeschke, Hartmut; Gunewardena, Sumedha; Whelan, Stephen A; Hanover, John A; Zachara, Natasha E; Slawson, Chad; Apte, UdayanJanuary 1, 2022Not Determined
35088629Create StudyGenetic basis of thermal nociceptive sensitivity and brain weight in a BALB/c reduced complexity cross.Molecular painBeierle, Jacob A; Yao, Emily J; Goldstein, Stanley I; Scotellaro, Julia L; Sena, Katherine D; Linnertz, Colton A; Willits, Adam B; Kader, Leena; Young, Erin E; Peltz, Gary; Emili, Andrew; Ferris, Martin T; Bryant, Camron DJanuary 1, 2022Not Determined
35006629Create StudyProgressive loss of hepatocyte nuclear factor 4 alpha activity in chronic liver diseases in humans.Hepatology (Baltimore, Md.)Gunewardena, Sumedha; Huck, Ian; Walesky, Chad; Robarts, Dakota; Weinman, Steven; Apte, UdayanAugust 1, 2022Not Determined
34979037Create StudyNarrative Analysis in Adolescents With Fragile X Syndrome.American journal on intellectual and developmental disabilitiesNeal, Corinne N; Brady, Nancy C; Fleming, Kandace KJanuary 1, 2022Not Determined
34967257Create StudyExploring a Novel Tool to Measure Wandering Behavior in the Early Childhood Classroom.OTJR : occupation, participation and healthWallisch, Anna; Irvin, Dwight; Kearns, William D; Luo, Ying; Boyd, Brian; Rous, BethApril 1, 2022Not Determined
34779992Create StudyEffectiveness of Responsivity Intervention Strategies on Prelinguistic and Language Outcomes for Children with Autism Spectrum Disorder: A Systematic Review and Meta-Analysis of Group and Single Case Studies.Journal of autism and developmental disordersMcDaniel, Jena; Brady, Nancy C; Warren, Steven FNovember 1, 2022Not Determined
34766154Create StudyHistone lysine demethylase 4B regulates general and unique gene expression signatures in hypoxic cancer cells.MedCommQiu, Lei; Meng, Yang; Wang, Lingli; Gunewardena, Sumedha; Liu, Sicheng; Han, Junhong; Krieg, Adam JSeptember 1, 2021Not Determined
34734765Create StudyDraft Genome Sequence of the Bacterium Delftia acidovorans Strain D4B, Isolated from Soil.Microbiology resource announcementsHarris, Jackson; Gross, Marie; Kemball, Jeremy; Farajollahi, Sanaz; Dennis, Patrick; Sitko, John; Steel, J Jordan; Almand, Erin; Kelley-Loughnane, Nancy; Varaljay, Vanessa ANovember 4, 2021Not Determined
34716740Create StudyVisuomotor brain network activation and functional connectivity among individuals with autism spectrum disorder.Human brain mappingLepping, Rebecca J; McKinney, Walker S; Magnon, Grant C; Keedy, Sarah K; Wang, Zheng; Coombes, Stephen A; Vaillancourt, David E; Sweeney, John A; Mosconi, Matthew WFebruary 1, 2022Not Determined
34618990Create StudyNovel insights into negative pressure wound healing from an in situ porcine perspective.Wound repair and regeneration : official publication of the Wound Healing Society [and] the European Tissue Repair SocietyHodge, Jacob G; Pistorio, Ashley L; Neal, Christopher A; Dai, Hongyan; Nelson-Brantley, Jennifer G; Steed, Molly E; Korentager, Richard A; Zamierowski, David S; Mellott, Adam JJanuary 1, 2022Not Determined
34544872Create StudyElongin functions as a loading factor for Mediator at ATF6α-regulated ER stress response genes.Proceedings of the National Academy of Sciences of the United States of AmericaHe, Yanfeng; Sato, Shigeo; Tomomori-Sato, Chieri; Chen, Shiyuan; Goode, Zach H; Conaway, Joan W; Conaway, Ronald CSeptember 28, 2021Not Determined
34525947Create StudyPredicting progress in word learning for children with autism and minimal verbal skills.Journal of neurodevelopmental disordersBrady, Nancy C; Kosirog, Christine; Fleming, Kandace; Williams, LindsaySeptember 15, 2021Not Determined
34496766Create StudyVisual and somatosensory feedback mechanisms of precision manual motor control in autism spectrum disorder.Journal of neurodevelopmental disordersShafer, Robin L; Wang, Zheng; Bartolotti, James; Mosconi, Matthew WSeptember 8, 2021Not Determined
34302166Create StudyIn-frame deletion of SPECC1L microtubule association domain results in gain-of-function phenotypes affecting embryonic tissue movement and fusion events.Human molecular geneticsGoering, Jeremy P; Wenger, Luke W; Stetsiv, Marta; Moedritzer, Michael; Hall, Everett G; Isai, Dona Greta; Jack, Brittany M; Umar, Zaid; Rickabaugh, Madison K; Czirok, Andras; Saadi, IrfanDecember 17, 2021Not Determined
34290471Create StudyImproving Educators'' Knowledge, Confidence, and Usefulness of a Comprehensive, Integrated, Three-tiered (Ci3T) Model of Prevention: Outcomes of Professional Learning.Education & treatment of childrenLane, Kathleen Lynne; Oakes, Wendy Peia; Allen, Grant Edmund; Lane, Nathan Allen; Jenkins, Abbie B; Lane, Katie Scarlett; Messenger, Mallory L; Buckman, Matthew M; Fleming, Kandace K; Romine, Rebecca E SwinburneSeptember 1, 2020Not Determined
34267402Create StudyStudent and Teacher Outcomes of the Class-Wide Function-Related Intervention Team Efficacy Trial.Exceptional childrenWills, Howard; Kamps, Debra; Fleming, Kandace; Hansen, BlakeOctober 1, 2016Not Determined
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29776967Create StudyMulticentre study of maternal and neonatal outcomes in individuals with Prader-Willi syndrome.Journal of medical geneticsSingh, Preeti; Mahmoud, Ranim; Gold, June-Anne; Miller, Jennifer L; Roof, Elizabeth; Tamura, Roy; Dykens, Elisabeth; Butler, Merlin G; Driscoll, Dan J; Kimonis, VirginiaSeptember 2018Not Determined
29763602Create StudyA ketogenic diet reduces metabolic syndrome-induced allodynia and promotes peripheral nerve growth in mice.Experimental neurologyCooper, Michael A; Menta, Blaise W; Perez-Sanchez, Consuelo; Jack, Megan M; Khan, Zair W; Ryals, Janelle M; Winter, Michelle; Wright, Douglas EAugust 2018Not Determined
29672222Create StudyMacrophage-derived extracellular vesicles mediate smooth muscle hyperplasia: role of altered miRNA cargo in response to HIV infection and substance abuse.FASEB journal : official publication of the Federation of American Societies for Experimental BiologySharma, Himanshu; Chinnappan, Mahendran; Agarwal, Stuti; Dalvi, Pranjali; Gunewardena, Sumedha; O'Brien-Ladner, Amy; Dhillon, Navneet KSeptember 2018Not Determined
29656312Create StudyEvaluation of taurine neuroprotection in aged rats with traumatic brain injury.Brain imaging and behaviorGupte, Raeesa; Christian, Sarah; Keselman, Paul; Habiger, Joshua; Brooks, William M; Harris, Janna LApril 2019Not Determined
29654721Create StudyPleiotropic Role of p53 in Injury and Liver Regeneration after Acetaminophen Overdose.The American journal of pathologyBorude, Prachi; Bhushan, Bharat; Gunewardena, Sumedha; Akakpo, Jephte; Jaeschke, Hartmut; Apte, UdayanJune 2018Not Determined
29649429Create StudyDeletion of the insulin receptor in sensory neurons increases pancreatic insulin levels.Experimental neurologyGrote, Caleb W; Wilson, Natalie M; Katz, Natalie K; Guilford, Brianne L; Ryals, Janelle M; Novikova, Lesya; Stehno-Bittel, Lisa; Wright, Douglas EJuly 2018Not Determined
29641392Create StudyA Noninvasive Brain-Computer Interface for Real-Time Speech Synthesis: The Importance of Multimodal Feedback.IEEE transactions on neural systems and rehabilitation engineering : a publication of the IEEE Engineering in Medicine and Biology SocietyBrumberg, Jonathan S; Pitt, Kevin M; Burnison, Jeremy DApril 2018Not Determined
29634432Create StudyDifferential Gene Expression and Pathway Analysis in Juvenile Nasopharyngeal Angiofibroma Using RNA Sequencing.Otolaryngology--head and neck surgery : official journal of American Academy of Otolaryngology-Head and Neck SurgeryJones, Joel W; Usman, Shireen; New, Jacob; Holcomb, Andrew; Gunewardena, Sumedha; Tawfik, Ossama; Hoover, Larry; Bruegger, Daniel; Thomas, Sufi MarySeptember 2018Not Determined
29602908Create StudyA Review of Promising Natural Chemopreventive Agents for Head and Neck Cancer.Cancer prevention research (Philadelphia, Pa.)Crooker, Kyle; Aliani, Rana; Ananth, Megha; Arnold, Levi; Anant, Shrikant; Thomas, Sufi MaryAugust 2018Not Determined
29531813Create StudyFOXO3-dependent apoptosis limits alcohol-induced liver inflammation by promoting infiltrating macrophage differentiation.Cell death discoveryLi, Zhuan; Zhao, Jie; Zhang, Shujun; Weinman, Steven ADecember 2018Not Determined
29491161Create StudyRelative Abundance of Integrant-Derived Viral RNAs in Infected Tissues Harvested from Chronic Hepatitis B Virus Carriers.Journal of virologyFreitas N, Lukash T, Gunewardena S, Chappell B, Slagle BL, Gudima SOMay 2018Not Determined
29476821Create StudyAssessing complex movement behaviors in rodent models of neurological disorders.Neurobiology of learning and memoryMcCarson, Kenneth E; Winter, Michelle K; Abrahamson, Dale R; Berman, Nancy E; Smith, Peter GNovember 2019Not Determined
29464752Create StudyVoluntary wheel running attenuates urinary bladder hypersensitivity and dysfunction following neonatal maternal separation in female mice.Neurourology and urodynamicsPierce, Angela N; Eller-Smith, Olivia C; Christianson, Julie AJune 2018Not Determined
29434541Create StudyThe Influence of Early Life Experience on Visceral Pain.Frontiers in systems neuroscienceFuentes, Isabella M; Christianson, Julie AJanuary 2018Not Determined
29385839Create StudyExamining sensory ability, feature matching and assessment-based adaptation for a brain-computer interface using the steady-state visually evoked potential.Disability and rehabilitation. Assistive technologyBrumberg, Jonathan S; Nguyen, Anh; Pitt, Kevin M; Lorenz, Sean DApril 2019Not Determined
29383380Create StudyConcurrent Validity and Reliability for the Communication Complexity Scale.American journal of speech-language pathologyBrady, Nancy C; Fleming, Kandace; Romine, Rebecca Swinburne; Holbrook, Alison; Muller, Kristen; Kasari, ConnieFebruary 2018Not Determined
29379420Create StudyDifferential Influence of Early Life and Adult Stress on Urogenital Sensitivity and Function in Male Mice.Frontiers in systems neuroscienceFuentes, Isabella M; Pierce, Angela N; Di Silvestro, Elizabeth R; Maloney, Molly O; Christianson, Julie AJanuary 2017Not Determined
29351484Create StudyThe serum metabolomics signature of type 2 diabetes is obscured in Alzheimer''s disease.American journal of physiology. Endocrinology and metabolismMorris, Jill K; Piccolo, Brian D; Shankar, Kartik; Thyfault, John P; Adams, Sean HJune 2018Not Determined
29351058Create StudyDevelopment and Characterization of an In Vitro Model for Radiation-Induced Fibrosis.Radiation researchKumar, Dhruv; Yalamanchali, Sreeya; New, Jacob; Parsel, Sean; New, Natalie; Holcomb, Andrew; Gunewardena, Sumedha; Tawfik, Ossama; Lominska, Chris; Kimler, Bruce F; Anant, Shrikant; Kakarala, Kiran; Tsue, Terance; Shnayder, Yelizaveta; Sykes, Kevin; Padhye, Subhash; Thomas, Sufi MaryMarch 2018Not Determined
29318256Create StudyBrain-Computer Interfaces for Augmentative and Alternative Communication: A Tutorial.American journal of speech-language pathologyBrumberg, Jonathan S; Pitt, Kevin M; Mantie-Kozlowski, Alana; Burnison, Jeremy DFebruary 2018Not Determined
29286317Create StudyMotor, Somatosensory, Viscerosensory and Metabolic Impairments in a Heterozygous Female Rat Model of Rett Syndrome.International journal of molecular sciencesBhattacherjee A, Winter MK, Eggimann LS, Mu Y, Gunewardena S, Liao Z, Christianson JA, Smith PGDecember 2017Not Determined
29255901Create StudyLongitudinal Study of Language and Speech of Twins at 4 and 6 Years: Twinning Effects Decrease, Zygosity Effects Disappear, and Heritability Increases.Journal of speech, language, and hearing research : JSLHRRice, Mabel L; Zubrick, Stephen R; Taylor, Catherine L; Hoffman, Lesa; Gayán, JavierJanuary 2018Not Determined
29237843Create StudyHuman Parvovirus B19 Utilizes Cellular DNA Replication Machinery for Viral DNA Replication.Journal of virologyZou, Wei; Wang, Zekun; Xiong, Min; Chen, Aaron Yun; Xu, Peng; Ganaie, Safder S; Badawi, Yomna; Kleiboeker, Steve; Nishimune, Hiroshi; Ye, Shui Qing; Qiu, JianmingMarch 2018Not Determined
29155208Create StudyInflammatory Renin-Angiotensin System Disruption Attenuates Sensory Hyperinnervation and Mechanical Hypersensitivity in a Rat Model of Provoked Vestibulodynia.The journal of pain : official journal of the American Pain SocietyChakrabarty, Anuradha; Liao, Zhaohui; Mu, Ying; Smith, Peter GMarch 2018Not Determined
29075557Create StudyRats bred for low and high running capacity display alterations in peripheral tissues and nerves relevant to neuropathy and pain.Brain and behaviorCooper, Michael A; Jack, Megan M; Ryals, Janelle M; Hayley, Page; Escher, Taylor; Koch, Lauren G; Britton, Steven L; Raupp, Shelby M; Winter, Michelle K; McCarson, Kenneth E; Geiger, Paige C; Thyfault, John P; Wright, Douglas EOctober 2017Not Relevant
29070615Create StudyMitochondrial Haplotype Alters Mammary Cancer Tumorigenicity and Metastasis in an Oncogenic Driver-Dependent Manner.Cancer researchBrinker AE, Vivian CJ, Koestler DC, Tsue TT, Jensen RA, Welch DRDecember 2017Not Determined
28984907Create StudyPrader-Willi syndrome genetic subtypes and clinical neuropsychiatric diagnoses in residential care adults.Clinical geneticsManzardo, A M; Weisensel, N; Ayala, S; Hossain, W; Butler, M GMarch 2018Not Determined
28972076Create StudySecretory Autophagy in Cancer-Associated Fibroblasts Promotes Head and Neck Cancer Progression and Offers a Novel Therapeutic Target.Cancer researchNew, Jacob; Arnold, Levi; Ananth, Megha; Alvi, Sameer; Thornton, Mackenzie; Werner, Lauryn; Tawfik, Ossama; Dai, Hongying; Shnayder, Yelizaveta; Kakarala, Kiran; Tsue, Terance T; Girod, Douglas A; Ding, Wen-Xing; Anant, Shrikant; Thomas, Sufi MaryDecember 2017Not Relevant
28887630Create StudyNCB5OR Deficiency in the Cerebellum and Midbrain Leads to Dehydration and Alterations in Thirst Response, Fasted Feeding Behavior, and Voluntary Exercise in Mice.Cerebellum (London, England)Stroh MA, Winter MK, Mccarson KE, Thyfault JP, Zhu HApril 2018Not Determined
28877882Create StudyMechanotransduction signaling in podocytes from fluid flow shear stress.American journal of physiology. Renal physiologySrivastava, Tarak; Dai, Hongying; Heruth, Daniel P; Alon, Uri S; Garola, Robert E; Zhou, Jianping; Duncan, R Scott; El-Meanawy, Ashraf; McCarthy, Ellen T; Sharma, Ram; Johnson, Mark L; Savin, Virginia J; Sharma, MukutJanuary 2018Not Determined
28760966Create StudyNeuronal cytoskeletal gene dysregulation and mechanical hypersensitivity in a rat model of Rett syndrome.Proceedings of the National Academy of Sciences of the United States of AmericaBhattacherjee A, Mu Y, Winter MK, Knapp JR, Eggimann LS, Gunewardena SS, Kobayashi K, Kato S, Krizsan-Agbas D, Smith PGAugust 2017Not Relevant
28663334Create StudyMitochondrial Genomic Backgrounds Affect Nuclear DNA Methylation and Gene Expression.Cancer researchVivian CJ, Brinker AE, Graw S, Koestler DC, Legendre C, Gooden GC, Salhia B, Welch DRNovember 2017Not Determined
28419188Create StudyInteractive Book Reading to Accelerate Word Learning by Kindergarten Children With Specific Language Impairment: Identifying Adequate Progress and Successful Learning Patterns.Language, speech, and hearing services in schoolsStorkel HL, Komesidou R, Fleming KK, Romine RSApril 2017Not Determined
28418456Create StudyMapping the Early Language Environment Using All-Day Recordings and Automated Analysis.American journal of speech-language pathologyGilkerson, Jill; Richards, Jeffrey A; Warren, Steven F; Montgomery, Judith K; Greenwood, Charles R; Kimbrough Oller, D; Hansen, John H L; Paul, Terrance DMay 2017Not Determined
28219082Create StudyGrowth of Expressive Syntax in Children With Fragile X Syndrome.Journal of speech, language, and hearing research : JSLHRKomesidou R, Brady NC, Fleming K, Esplund A, Warren SFFebruary 2017Not Determined
28164167Create StudyNeonatal maternal separation increases susceptibility to experimental colitis and acute stress exposure in male mice.IBRO reportsFuentes, Isabella M; Walker, Natalie K; Pierce, Angela N; Holt, Briana R; Di Silvestro, Elizabeth R; Christianson, Julie ADecember 2016Not Determined
28074357Create StudyThe Longitudinal Effects of Parenting on Adaptive Behavior in Children with Fragile X Syndrome.Journal of autism and developmental disordersWarren, Steven F; Brady, Nancy; Fleming, Kandace K; Hahn, Laura JMarch 2017Relevant
28062309Create StudyA Local Inflammatory Renin-Angiotensin System Drives Sensory Axon Sprouting in Provoked Vestibulodynia.The journal of pain : official journal of the American Pain SocietyLiao, Zhaohui; Chakrabarty, Anuradha; Mu, Ying; Bhattacherjee, Aritra; Goestch, Martha; Leclair, Catherine M; Smith, Peter GMay 2017Not Determined
28056468Create StudyEfficacy of a Supplemental Phonemic Awareness Curriculum to Instruct Preschoolers With Delays in Early Literacy Development.Journal of speech, language, and hearing research : JSLHRGoldstein H, Olszewski A, Haring C, Greenwood CR, Mccune L, Carta J, Atwater J, Guerrero G, Schneider N, Mccarthy T, Kelley ESJanuary 2017Not Determined
27935216Create StudyModulation of diet-induced mechanical allodynia by metabolic parameters and inflammation.Journal of the peripheral nervous system : JPNSCooper MA, Ryals JM, Wu PY, Wright KD, Walter KR, Wright DEMarch 2017Not Relevant
27573800Create StudyEffects of Tongue Force Training on Bulbar Motor Function in the Female SOD1-G93A Rat Model of Amyotrophic Lateral Sclerosis.Neurorehabilitation and neural repairMa D, Shuler JM, Kumar A, Stanford QR, Tungtur S, Nishimune H, Stanford JAFebruary 2017Not Determined
27542396Create StudyDo early caregiver concerns differ for girls with autism spectrum disorders?Autism : the international journal of research and practiceLittle LM, Wallisch A, Salley B, Jamison RAugust 2017Not Determined
27526621Create StudyThe Influence of Televised Food Commercials on Children's Food Choices: Evidence from Ventromedial Prefrontal Cortex Activations.The Journal of pediatricsBruce AS, Pruitt SW, Ha OR, Cherry JB, Smith TR, Bruce JM, Lim SLOctober 2016Not Determined
27436332Create StudyAll Nations Breath of Life: A Randomized Trial of Smoking Cessation for American Indians.American journal of preventive medicineChoi WS, Beebe LA, Nazir N, Kaur B, Hopkins M, Talawyma M, Shireman TI, Yeh HW, Greiner KA, Daley CMNovember 2016Not Determined
27362506Create StudyPrenatal DHA supplementation and infant attention.Pediatric researchColombo, John; Gustafson, Kathleen M; Gajewski, Byron J; Shaddy, D Jill; Kerling, Elizabeth H; Thodosoff, Jocelynn M; Doty, Tasha; Brez, Caitlin C; Carlson, Susan ENovember 1, 2016Not Determined
helpcenter.collection.publications-tab

NDA Help Center

Collection - Publications

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

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

Frequently Asked Questions

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

Glossary

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

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
28074357Create StudyThe Longitudinal Effects of Parenting on Adaptive Behavior in Children with Fragile X Syndrome.Journal of autism and developmental disordersWarren, Steven F; Brady, Nancy; Fleming, Kandace K; Hahn, Laura JMarch 2017
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
107/15/2017
45
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
1607/15/2017
34
Approved
ADOS info icon
1407/15/2017
22
Approved
MacArthur Bates Communicative Development Inventory info icon
407/15/2017
25
Approved
Peabody Picture Vocabulary Test, Fourth Edition info icon
1607/15/2017
45
Approved
Vineland (Parent and Caregiver) info icon
1207/15/2017
26
Approved
Communication Complexity Scale info icon
1903/01/2019
34
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.32/17423Secondary AnalysisShared
The effect of compensatory mechanisms during and after pregnancy on a child's developmentEarly childhood involves rapid processes of human growth leading to different trajectories in physical, cognitive, social, and emotional development (Graignic-Philippe et al., 2014). These processes are influenced by a wide variety of factors such as maternal health, environmental stressors, and early childhood experiences. Current literature has shown how exposure to both acute and chronic stress during pregnancy have a pathogenetic effect throughout childhood (Kim & Leventhal, 2015; Rice, et al, 2010), leading to neurotypical or atypical development. Studies have shown how these stressors are linked neurodevelopmental disorders such Autism Spectrum Disorders (Zerbo et al., 2015; Atladóttir et al., 2012) or Attention Deficit Hyperactivity Disorder (Rosenqvist et al., 2019). In recent years, there has been a shift from traditional diagnostic research models to synthesis of different scientific fields to map lifecourse development in order for rapid translation into healthcare practices (Halfon et al., 2014). Whilst there are studies showing links between stress and atypical developmental outcomes, there is still very limited literature on compensatory mechanisms found pre- and post-pregnancy, which illustrate development of protective factors (such as presence of self-regulation, high verbal intelligence, sociability, adept social communication) against atypical developmental outcomes. This study aims to identify and measure the presence of these protective factors that appear to guard against or mitigate the emergence of neurodevelopmental disorders. Therefore, nationwide and longitudinal data are needed in order to accurately create risk models in order to map developmental trajectories. 6/5717Secondary AnalysisPrivate
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.13/280Primary 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.9/200Secondary AnalysisShared
Investigating Vocabulary Profiles in Preverbal and Minimally Verbal Children with Autism Spectrum DisorderThe majority of children with autism spectrum disorder (ASD) are delayed in producing their first words and approximately 30% continue to be minimally verbal across childhood. The current study examined the syntactic and semantic features of the early words that 64 preverbal and minimally verbal children with ASD produced and compared them to 682 typically developing (TD) toddlers who produced 1-10 words. Word-level responses that were reported on the MacArthur-Bates Communicative Development Inventory were examined. Children with ASD produced a greater proportion of predicates, relative to the TD group. Also, there were group differences in the following semantic categories: action words, people, sound effects, and animals. Of these, children with ASD produced more action words. We further examined the action words by assigning them social scores, with action words that typically involve people having higher social scores. TD toddlers produced action words that were slightly more social than children with ASD. These findings suggest that future studies should examine early verb learning and processing in children with ASD.6/64Secondary AnalysisShared
Vocabulary Comprehension in MV Children with ASDThe majority of children with autism spectrum disorder (ASD) experience early language delays; approximately 30% continue to be minimally verbal throughout childhood. The current study examined the syntactic and semantic features of the early words that 31 minimally verbal (MV) children with ASD were reported to understand. This receptive vocabulary profile was compared to 124 TD toddlers who were matched on expressive vocabulary and 124 TD toddlers who were matched on receptive vocabulary. Word-level responses that were reported on the MacArthur-Bates Communicative Development Inventory were examined. Children with ASD understood a greater proportion of verbs, relative to both the TD groups. Numerous additional differences existed between the MV-ASD group and the TD expressive vocabulary-matched group. In contrast, with a few exceptions, MV children with ASD displayed a similar receptive vocabulary profile to TD toddlers who were matched on receptive vocabulary abilities. These similarities existed despite large differences in expressive vocabulary knowledge, chronological age, and mental age. These findings suggest that future studies should examine early verb learning and processing in MV children with ASD.8/31Secondary 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