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 Tab

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

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

SelectExperiment IdExperiment NameExperiment Type
Created On
24HI-NGS_R1Omics02/16/2011
475MB1-10 (CHOP)Omics06/07/2016
490Illumina Infinium PsychArray BeadChip AssayOmics07/07/2016
501PharmacoBOLD Resting StatefMRI07/27/2016
506PVPREFOmics08/05/2016
509ABC-CT Resting v2EEG08/18/2016
13Comparison of FI expression in Autistic and Neurotypical Homo SapiensOmics12/28/2010
18AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics01/06/2011
22Stitching PCR SequencingOmics02/14/2011
26ASD_MethylationOmics03/01/2011
29Microarray family 03 (father, mother, sibling)Omics03/24/2011
37Standard paired-end sequencing of BCRsOmics04/19/2011
38Illumina Mate-Pair BCR sequencingOmics04/19/2011
39Custom Jumping LibrariesOmics04/19/2011
40Custom CapBPOmics04/19/2011
41ImmunofluorescenceOmics05/11/2011
43Autism brain sample genotyping, IlluminaOmics05/16/2011
47ARRA Autism Sequencing Collaboration at Baylor. SOLiD 4 SystemOmics08/01/2011
53AGRE Omni1-quadOmics10/11/2011
59AGP genotypingOmics04/03/2012
60Ultradeep 454 sequencing of synaptic genes from postmortem cerebella of individuals with ASD and neurotypical controlsOmics06/23/2012
63Microemulsion PCR and Targeted Resequencing for Variant Detection in ASDOmics07/20/2012
76Whole Genome Sequencing in Autism FamiliesOmics01/03/2013
519RestingfMRI11/08/2016
90Genotyped IAN SamplesOmics07/09/2013
91NJLAGS Axiom Genotyping ArrayOmics07/16/2013
93AGP genotyping (CNV)Omics09/06/2013
106Longitudinal Sleep Study. H20 200. Channel set 2EEG11/07/2013
107Longitudinal Sleep Study. H20 200. Channel set 3EEG11/07/2013
108Longitudinal Sleep Study. AURA 200EEG11/07/2013
105Longitudinal Sleep Study. H20 200. Channel set 1EEG11/07/2013
109Longitudinal Sleep Study. AURA 400EEG11/07/2013
116Gene Expression Analysis WG-6Omics01/07/2014
131Jeste Lab UCLA ACEii: Charlie Brown and Sesame Street - Project 1Eye Tracking02/27/2014
132Jeste Lab UCLA ACEii: Animacy - Project 1Eye Tracking02/27/2014
133Jeste Lab UCLA ACEii: Mom Stranger - Project 2Eye Tracking02/27/2014
134Jeste Lab UCLA ACEii: Face Emotion - Project 3Eye Tracking02/27/2014
145AGRE/FMR1_Illumina.JHUOmics04/14/2014
146AGRE/MECP2_Sanger.JHUOmics04/14/2014
147AGRE/MECP2_Junior.JHUOmics04/14/2014
151Candidate Gene Identification in familial AutismOmics06/09/2014
152NJLAGS Whole Genome SequencingOmics07/01/2014
154Math Autism Study - Vinod MenonfMRI07/15/2014
155RestingfMRI07/25/2014
156SpeechfMRI07/25/2014
159EmotionfMRI07/25/2014
160syllable contrastEEG07/29/2014
167School-age naturalistic stimuliEye Tracking09/19/2014
44AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics06/27/2011
45Exome Sequencing of 20 Sporadic Cases of Autism Spectrum DisorderOmics07/15/2011
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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Predictors of Cognitive Development in Autism Spectrum Disorder
Marjorie Solomon 
Existing studies of middle childhood suggest that some children with ASD show significant improvements in IQ and other aspects of cognitive functioning during this period, while others stabilize or fall further behind. With the increased availability of intensive early intervention, it is not clear that findings from these older studies are applicable to children with ASD now. Given that cognitive abilities developed through early and middle childhood provide a critical foundation for later competencies, and are the strongest predictors of adolescent and adult outcomes, the lack of clarity about cognitive development during middle childhood constitutes a significant gap in our understanding of ASD. To close this gap we propose to conduct a longitudinal study of individuals with ASD that focuses on middle childhood in a well-characterized cohort of children from the UC Davis MIND Institute Autism Phenome Project (APP). One hundred and eighty nine toddlers with ASD and 90 with typical development (TYP) were assessed during early childhood (at 2-3.5 years or T1). A subset of these children received additional behavioral assessments when they were 5-6.5 years old (T2) and provide pilot data for the application. In the proposed study, we will reassess the original cohort of 279 when they reach middle childhood (at 8-10 years or T3). In Aim #1 we will a) examine cognitive functioning; and b) identify distinct developmental trajectories of intellectual functioning/IQ between early and middle childhood and predictors of membership in these trajectories. We hypothesize that they will show 3 trajectories of intellectual development based on our pilot data and the literature. These include the: 1) the Stable Low developmental trajectory; 2) the Stable High developmental trajectory; and 3) the Changers developmental trajectory. We hypothesize that membership in the Stable High group at T3, will be predicted by better executive attentional control and fewer autism-related social affect symptoms at T1; and that membership in the Changers group at T3, vs. the Stable Low group, will be predicted by the absence of regression and fewer autism-related communication symptoms at T1. In Aim #2, we test 2 mechanistic models of how intensive early intervention might promote positive middle childhood functioning in individuals with ASD. These include the "Hippocampal Compensation Model," which proposes that in some children intervention promotes neuroplasticity of the hippocampus which then leads to improvements in memory, IQ, and academic functioning in middle childhood and the "Social Attention Model," which suggests that in children with better academic, social, and adaptive functioning at T3 there will be a positive association between intensity of early intervention, and executive attentional control and social communication development. This application addresses IACC Strategic Plan Questions 2 and 4; and the NIMH RDoC recommendation to study executive attentional control. PUBLIC HEALTH RELEVANCE: We propose a middle childhood follow up of children with ASD and TYP first assessed in early childhood. We investigate trajectories of IQ development and their predictors. We test two models of the effects of early intensive behavioral intervention on middle childhood academic, social, and adaptive functioning.
NIMH Data Archive
06/15/2015
Funding Completed
Close Out
Shared
No
$3,358,312.00
236
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NIH - Extramural None

QA-notification.txt Other Quality Assurance Notification Qualified Researchers

R01MH103284-01 Predictors of Cognitive Development in Autism Spectrum Disorder 09/11/2014 04/30/2025 279 172 UNIVERSITY OF CALIFORNIA AT DAVIS $3,358,312.00

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Collection - General Tab

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

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

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

Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 3 Clinical Assessments 26
CELF-4 Clinical Eval of Lang Fundamentals, 4th ed Clinical Assessments 146
Child Behavior Checklist (CBCL) 6-18 Clinical Assessments 47
Children's Communication Checklist - 2 Clinical Assessments 214
Cognition Composite Scores Clinical Assessments 159
DAS-II: Differential Ability Scales 2nd Ed. School Age Clinical Assessments 51
Dimensional Change Card Sort Test (DCCS) Clinical Assessments 181
Flanker Task Clinical Assessments 181
Gray Oral Reading Tests Clinical Assessments 145
Harter's Self-Concept Measures. Adolescent and Child Version Clinical Assessments 164
List Sorting Working Memory Test (LSWM) Clinical Assessments 149
Pattern Comparison Processing Speed Clinical Assessments 181
Picture Sequence Memory Clinical Assessments 181
Repetitive Behavior Scale - Revised (RBS-R) Clinical Assessments 47
Research Subject Clinical Assessments 53
SRS-2. Adult, Preschool and School Age Clinical Assessments 27
Screen for Child Anxiety Related Disorders (SCARED), Parent/Child Clinical Assessments 49
Sensory Profile Short 2 Clinical Assessments 46
Social Communication Questionnaire (SCQ) - Lifetime Clinical Assessments 48
Social Responsiveness Scale (SRS) Clinical Assessments 48
Temperament in Middle Childhood Questionnaire Clinical Assessments 206
Test of Word Reading Efficiency (TOWRE) Clinical Assessments 148
Vineland-II - Parent and Caregiver Rating Form (2005) Clinical Assessments 47
Wide Range Assessment of Memory and Learning Clinical Assessments 154

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
35284637Create StudyOften Undiagnosed but Treatable: Case Vignettes and Clinical Considerations for Assessing Anxiety Disorders in Youth with Autism Spectrum Disorder and Intellectual Disability.Evidence-based practice in child and adolescent mental healthJanuary 1, 2022Not Determined
33388135Create StudyLongitudinal Evaluation of Cerebral Growth Across Childhood in Boys and Girls With Autism Spectrum Disorder.Biological psychiatryLee, Joshua K; Andrews, Derek S; Ozonoff, Sally; Solomon, Marjorie; Rogers, Sally; Amaral, David G; Nordahl, Christine WuSeptember 1, 2021Not Determined
33372389Create StudyFear Potentiated Startle in Children With Autism Spectrum Disorder: Association With Anxiety Symptoms and Amygdala Volume.Autism research : official journal of the International Society for Autism ResearchHessl, David; Libero, Lauren; Schneider, Andrea; Kerns, Connor; Winder-Patel, Breanna; Heath, Brianna; Lee, Joshua; Coleman, Cory; Sharma, Natasha; Solomon, Marjorie; Nordahl, Christine Wu; Amaral, David GMarch 1, 2021Not Determined
33349451Create StudyA Longitudinal Study of White Matter Development in Relation to Changes in Autism Severity Across Early Childhood.Biological psychiatryAndrews, Derek Sayre; Lee, Joshua K; Harvey, Danielle Jenine; Waizbard-Bartov, Einat; Solomon, Marjorie; Rogers, Sally J; Nordahl, Christine Wu; Amaral, David GMarch 1, 2021Not Determined
33184732Create StudyFactor Structure of the Children''s Sleep Habits Questionnaire in Young Children with and Without Autism.Journal of autism and developmental disordersHatch, Burt; Nordahl, Christine Wu; Schwichtenberg, A J; Ozonoff, Sally; Miller, MeghanSeptember 1, 2021Not Determined
33164343Create StudyIntroduction to the Special Collection on "Memory in Autism Spectrum Disorder".Autism research : official journal of the International Society for Autism ResearchRing, Melanie; Solomon, MarjorieNovember 1, 2020Not Determined
33006263Create StudyUsing the NIH Toolbox to Assess Cognition in Adolescents and Young Adults with Autism Spectrum Disorders.Autism research : official journal of the International Society for Autism ResearchSolomon, Marjorie; Gordon, Andrew; Iosif, Ana-Maria; Geddert, Raphael; Krug, Marie K; Mundy, Peter; Hessl, DavidMarch 1, 2021Not Determined
32954661Create StudyChildren with ASD Show Impaired Item-Space Recollection, But Preserved Item-Color Recollection.Autism research : official journal of the International Society for Autism ResearchMooney, Lindsey N; Nordahl, Christine Wu; Solomon, Marjorie; Ghetti, SimonaNovember 1, 2020Not Determined
32864896Create StudyEye-Tracking Reveals Absent Repetition Learning Across the Autism Spectrum: Evidence From a Passive Viewing Task.Autism research : official journal of the International Society for Autism ResearchGaigg, Sebastian B; Krug, Marie K; Solomon, Marjorie; Roestorf, Amanda; Derwent, Claire; Anns, Sophie; Bowler, Dermot M; Rivera, Susan; Nordahl, Christine Wu; Jones, Emily J HNovember 2020Not Determined
32767543Create StudyDevelopmental-behavioral profiles in children with autism spectrum disorder and co-occurring gastrointestinal symptoms.Autism research : official journal of the International Society for Autism ResearchRestrepo, Bibiana; Angkustsiri, Kathleen; Taylor, Sandra L; Rogers, Sally J; Cabral, Jacqueline; Heath, Brianna; Hechtman, Alexa; Solomon, Marjorie; Ashwood, Paul; Amaral, David G; Nordahl, Christine WuOctober 2020Not Determined
32410098Create StudyTrajectories of Autism Symptom Severity Change During Early Childhood.Journal of autism and developmental disordersWaizbard-Bartov, Einat; Ferrer, Emilio; Young, Gregory S; Heath, Brianna; Rogers, Sally; Wu Nordahl, Christine; Solomon, Marjorie; Amaral, David GJanuary 1, 2021Not Determined
31972262Create StudyHigh Psychopathology Subgroup in Young Children With Autism: Associations With Biological Sex and Amygdala Volume.Journal of the American Academy of Child and Adolescent PsychiatryNordahl, Christine Wu; Iosif, Ana-Maria; Young, Gregory S; Hechtman, Alexa; Heath, Brianna; Lee, Joshua K; Libero, Lauren; Reinhardt, Vanessa P; Winder-Patel, Breanna; Amaral, David G; Rogers, Sally; Solomon, Marjorie; Ozonoff, SallyDecember 2020Not Determined
31839001Create StudyA diffusion-weighted imaging tract-based spatial statistics study of autism spectrum disorder in preschool-aged children.Journal of neurodevelopmental disordersAndrews, Derek Sayre; Lee, Joshua K; Solomon, Marjorie; Rogers, Sally J; Amaral, David G; Nordahl, Christine WuDecember 2019Not Determined
31676207Create StudyCompensatory Hippocampal Recruitment Supports Preserved Episodic Memory in Autism Spectrum Disorder.Biological psychiatry. Cognitive neuroscience and neuroimagingHogeveen, Jeremy; Krug, Marie K; Geddert, Raphael M; Ragland, J Daniel; Solomon, MarjorieJanuary 2020Not Determined
31563470Create StudySex Differences in the Amygdala Resting-State Connectome of Children With Autism Spectrum Disorder.Biological psychiatry. Cognitive neuroscience and neuroimagingLee, Joshua K; Amaral, David G; Solomon, Marjorie; Rogers, Sally J; Ozonoff, Sally; Nordahl, Christine WuMarch 2020Not Determined
31449875Create StudyUnderstanding Hippocampal Development in Young Children With Autism Spectrum Disorder.Journal of the American Academy of Child and Adolescent PsychiatryReinhardt, Vanessa P; Iosif, Ana-Maria; Libero, Lauren; Heath, Brianna; Rogers, Sally J; Ferrer, Emilio; Nordahl, Christine; Ghetti, Simona; Amaral, David; Solomon, MarjorieSeptember 1, 2020Not Determined
30973243Create StudyEmotional false memory in autism spectrum disorder: More than spared.Journal of abnormal psychologySolomon, Marjorie; Iosif, Ana-Maria; Krug, Marie K; Nordahl, Christine Wu; Adler, Elyse; Mirandola, Chiara; Ghetti, SimonaMay 2019Not Determined
30616748Create StudyEarly Variations in Amygdala Development May Signal Divergent Behavioral Outcomes.Biological psychiatry. Cognitive neuroscience and neuroimagingNordahl, Christine Wu; Schumann, Cynthia MJanuary 2019Not Determined
29745707Create StudyProactive control as a double-edged sword in autism spectrum disorder.Journal of abnormal psychologyHogeveen, Jeremy; Krug, Marie K; Elliott, Matthew V; Carter, Cameron S; Solomon, MarjorieMay 2018Not Determined
29348036Create StudyIncreasing Traction for Discovery: The Research Domain Criteria Framework and Neurodevelopmental Disorders.Biological psychiatry. Cognitive neuroscience and neuroimagingSolomon M, Di Martino ASeptember 2017Not Determined
29234931Create StudyA Pilot Randomized Controlled Trial of the ACCESS Program: A Group Intervention to Improve Social, Adaptive Functioning, Stress Coping, and Self-Determination Outcomes in Young Adults with Autism Spectrum Disorder.Journal of autism and developmental disordersOswald TM, Winder-Patel B, Ruder S, Xing G, Stahmer A, Solomon MMay 2018Not Determined
29076255Create StudyWhat will my child''s future hold? phenotypes of intellectual development in 2-8-year-olds with autism spectrum disorder.Autism research : official journal of the International Society for Autism ResearchSolomon, Marjorie; Iosif, Ana-Maria; Reinhardt, Vanessa P; Libero, Lauren E; Nordahl, Christine W; Ozonoff, Sally; Rogers, Sally J; Amaral, David GJanuary 2018Not Determined
28924621Create StudyAn altered scaffold for information processing: Cognitive control development in adolescents with autism.Biological psychiatry. Cognitive neuroscience and neuroimagingSolomon, Marjorie; Hogeveen, Jeremy; Libero, Lauren; Nordahl, ChristineSeptember 2017Not Determined
28239961Create StudyIn pursuit of neurophenotypes: The consequences of having autism and a big brain.Autism research : official journal of the International Society for Autism ResearchAmaral, David G; Li, Deana; Libero, Lauren; Solomon, Marjorie; Van de Water, Judy; Mastergeorge, Ann; Naigles, Letitia; Rogers, Sally; Wu Nordahl, ChristineMay 2017Not Determined
27305922Create StudyTranslational Mouse Models of Autism: Advancing Toward Pharmacological Therapeutics.Current topics in behavioral neurosciencesKazdoba TM, Leach PT, Yang M, Silverman JL, Solomon M, Crawley JNJanuary 2016Not Relevant
26506585Create StudyAtypical Learning in Autism Spectrum Disorders: A Functional Magnetic Resonance Imaging Study of Transitive Inference.Journal of the American Academy of Child and Adolescent PsychiatrySolomon M, Ragland JD, Niendam TA, Lesh TA, Beck JS, Matter JC, Frank MJ, Carter CSNovember 2015Relevant
26279309Create StudyAssessing hippocampal development and language in early childhood: Evidence from a new application of the Automatic Segmentation Adapter Tool.Human brain mappingLee, Joshua K; Nordahl, Christine W; Amaral, David G; Lee, Aaron; Solomon, Marjorie; Ghetti, SimonaNovember 2015Not Determined
26077952Create StudyBrief report: parent-adolescent informant discrepancies of social skill importance and social skill engagement for higher-functioning adolescents with autism spectrum disorder.Journal of autism and developmental disordersMcmahon CM, Solomon MOctober 2015Relevant

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
26506585Create StudyAtypical Learning in Autism Spectrum Disorders: A Functional Magnetic Resonance Imaging Study of Transitive Inference.Journal of the American Academy of Child and Adolescent PsychiatrySolomon M, Ragland JD, Niendam TA, Lesh TA, Beck JS, Matter JC, Frank MJ, Carter CSNovember 2015
26077952Create StudyBrief report: parent-adolescent informant discrepancies of social skill importance and social skill engagement for higher-functioning adolescents with autism spectrum disorder.Journal of autism and developmental disordersMcmahon CM, Solomon MOctober 2015

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
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
ADOS info icon
5901/15/2016
26
Approved
Social Responsiveness Scale (SRS) info icon
8501/15/2016
48
Approved
Social Communication Questionnaire (SCQ) info icon
8501/15/2016
48
Approved
Child Behavior Checklist (CBCL) info icon
8501/15/2016
47
Approved
Childrens Communication Checklist-2 (CCC-2) info icon
16501/15/2016
214
Approved
Screen for Childhood Anxiety Related Emotional Disorders (SCARED) info icon
25001/15/2016
49
Approved
DAS-II: Differential Ability Scales info icon
8501/15/2016
51
Approved
Repetitive Behavior Scale - Revised (RBS-R) info icon
22501/15/2016
47
Approved
Sensory Profile info icon
8501/15/2016
46
Approved
Research Subject and Pedigree info icon
8501/15/2016
53
Approved
Clinical Evaluation of Language Fundamentals (CELF) info icon
8501/15/2016
146
Approved
Test of Word Reading Efficiency (TOWRE) info icon
25001/15/2016
148
Approved
Picture Sequence Memory info icon
22501/15/2016
181
Approved
Cognition Composite Scores info icon
22501/15/2016
159
Approved
Pattern Comparison Processing Speed info icon
22501/15/2016
181
Approved
List Sorting Working Memory Test info icon
22501/15/2016
149
Approved
Temperament in Middle Childhood Questionnaire info icon
8501/15/2016
206
Approved
Harters Self-Concept Measures. Adolescent and Child Version info icon
22501/15/2016
164
Approved
Vineland (Parent and Caregiver) info icon
16501/15/2016
47
Approved
Gray Oral Reading Tests info icon
16501/15/2016
145
Approved
Wide Range Assessment of Memory and Learning info icon
8501/15/2016
154
Approved
Dimensional Change Card Sort Test info icon
22501/15/2016
181
Approved
Flanker Task info icon
22501/15/2016
181
Approved
Structure not yet defined
No Status history for this Data Expected has been recorded yet

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.51/17423Secondary AnalysisShared
Controls for SCCRIPTo establish a well characterized cohort for pediatric patients living with sickle cell disease100/11185Secondary AnalysisPrivate
Working Title: Differentiating Core Autism SymptomatologyAutism spectrum disorder (ASD) is characterized by persistent deficits in social communication and social interaction, social-emotional reciprocity, and repetitive behavior or restricted interest (American Psychiatric Association [APA], 2013). This study extends the existing literature by clarifying the extent to which mental health disorder symptoms differentially converge with autism symptoms related to social communication and restricted and repetitive behavior, as well as the extent to which mental health symptoms are empirically differentiated from the core autism symptom domains. Although there is a well-documented correlation between the severity of core ASD symptoms and the presence of mental health disorder symptoms, such as anxiety and irritability, the nature of this linkage remains poorly understood. In this project, the National Database for Autism Research (NDAR) and Research Domain Criteria Database (RDoCdb) were used to observe continuous symptom measures such as the Social Responsiveness Scale (SRS) and the Child Behavior Checklist (CBCL) to examine correlation matrices as well as factor structure models to examine these patterns of association. The SRS “social communication” and “repetitive restricted” subscales were correlated with the CBCL externalizing, internalizing, attention, conduct, aggression, psychosomatic, and withdrawn subscales. We hypothesized that “repetitive and restricted” behaviors would be more correlated with the CBCL scales than would the “social communication” scale. These results were also interpreted according to age and IQ. In conclusion, this study may elucidate ongoing questions about the centrality of mental health symptoms like anxiety to aspects of ASD taxonomy. 48/11144Secondary AnalysisPrivate
Investigating autism etiology and heterogeneity by decision tree algorithmAutism spectrum disorder (ASD) is a neurodevelopmental disorder that causes deficits in cognition, communication and social skills. ASD, however, is a highly heterogeneous disorder. This heterogeneity has made identifying the etiology of ASD a particularly difficult challenge, as patients exhibit a wide spectrum of symptoms without any unifying genetic or environmental factors to account for the disorder. For better understanding of ASD, it is paramount to identify potential genetic and environmental risk factors that are comorbid with it. Identifying such factors is of great importance to determine potential causes for the disorder, and understand its heterogeneity. Existing large-scale datasets offer an opportunity for computer scientists to undertake this task by utilizing machine learning to reliably and efficiently obtain insight about potential ASD risk factors, which would in turn assist in guiding research in the field. In this study, decision tree algorithms were utilized to analyze related factors in datasets obtained from the National Database for Autism Research (NDAR) consisting of nearly 3000 individuals. We were able to identify 15 medical conditions that were highly associated with ASD diagnoses in patients; furthermore, we extended our analysis to the family medical history of patients and we report six potentially hereditary medical conditions associated with ASD. Associations reported had a 90% accuracy. Meanwhile, gender comparisons highlighted conditions that were unique to each gender and others that overlapped. Those findings were validated by the academic literature, thus opening the way for new directions for the use of decision tree algorithms to further understand the etiology of autism. 11/3382Secondary AnalysisShared
Autism Sensory Research Consortium Cross-lab Integrative Data Analysis Since 2013, when sensory features were officially added to the diagnostic criteria for autism, research into the sensory manifestations of the condition has increased dramatically. However, the majority of this research has primarily been conducted using small laboratory-based samples of children on the autism spectrum, substantially limiting the hypotheses that can be tested in any one dataset and the generalizability of results to the wider autistic population. The Autism Sensory Research Consortium (ASRC), funded by the Nancy Lurie Marks Family Foundation, represents the first major international collaboration of over a dozen research groups that study sensory functioning in autism. As a major thrust of this collaboration, the ASRC has begun a data sharing initiative, in which all participating labs can contribute existing data from their past and present research studies to a centralized database. These “Big Data” can then be systematically examined using powerful large-sample statistical techniques such as structural equation modeling and item response theory, which will allow researchers to test more complex hypotheses regarding the nature of sensory differences in autism and their relationships with sociodemographic and non-sensory clinical features. Once data from all sites has been pooled, it will be analyzed using a method called integrative data analysis, which is specially designed to derive insights from large and heterogeneous samples. One major advantage of this methodology is the ability to construct and test measurement models of sensory symptoms, determining the most appropriate set of questions for assessing each construct and making sure that the scales do not produce biased comparisons when they are examined across diagnostic groups or subsets of the autistic population. Furthermore, measurement models can be constructed to bridge multiple questionnaires, allowing for the calculation of robust composite scores that can be compared between studies that only administered items from one of the contributing questionnaires. These models can further facilitate pooling of data across studies, allowing us to amass even larger datasets to answer questions about sensory function in the autistic population. Furthermore, moving forward, the composite sensory measures from the integrative data analysis can be employed in other studies, providing investigators in sensory autism research with a suite of reliable and valid behavioral measures that can be used as outcomes in trials of interventions targeting these symptoms. In the long term, this project has the potential to help us better understand the nature of sensory function in persons on the spectrum, as well as how sensory alterations relate to broader features of the condition—specifically, for whom and/or at what point in development sensory features are most predictive of core autism behaviors or other meaningful clinical outcomes such as language acquisition and adaptive behavior. Incorporation of neuroscientific data collected within the ASRC can also possibly shed some light on the neural basis of sensory disruptions in the autistic population. All of this will help to lay a foundation for future work testing the efficacy of candidate interventions aimed at improving sensory function and more distal skills in autistic individuals.205/2110Secondary AnalysisPrivate
* Data not on individual level
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