NIMH Data Archive - Data

Genomics

Neuroimaging

Phenotype¹

New Trial
Clinical Trial

¹ Numbers reported are subjects by age

New Project
Grant/Project Number

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

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.

Select	Experiment Id	Experiment Name	Experiment Type	Created On

24	HI-NGS_R1	Omics	02/16/2011
475	MB1-10 (CHOP)	Omics	06/07/2016
490	Illumina Infinium PsychArray BeadChip Assay	Omics	07/07/2016
501	PharmacoBOLD Resting State	fMRI	07/27/2016
506	PVPREF	Omics	08/05/2016
509	ABC-CT Resting v2	EEG	08/18/2016
13	Comparison of FI expression in Autistic and Neurotypical Homo Sapiens	Omics	12/28/2010
18	AGRE/Broad Affymetrix 5.0 Genotype Experiment	Omics	01/06/2011
22	Stitching PCR Sequencing	Omics	02/14/2011
26	ASD_Methylation	Omics	03/01/2011
29	Microarray family 03 (father, mother, sibling)	Omics	03/24/2011
37	Standard paired-end sequencing of BCRs	Omics	04/19/2011
38	Illumina Mate-Pair BCR sequencing	Omics	04/19/2011
39	Custom Jumping Libraries	Omics	04/19/2011
40	Custom CapBP	Omics	04/19/2011
41	Immunofluorescence	Omics	05/11/2011
43	Autism brain sample genotyping, Illumina	Omics	05/16/2011
47	ARRA Autism Sequencing Collaboration at Baylor. SOLiD 4 System	Omics	08/01/2011
53	AGRE Omni1-quad	Omics	10/11/2011
59	AGP genotyping	Omics	04/03/2012
60	Ultradeep 454 sequencing of synaptic genes from postmortem cerebella of individuals with ASD and neurotypical controls	Omics	06/23/2012
63	Microemulsion PCR and Targeted Resequencing for Variant Detection in ASD	Omics	07/20/2012
76	Whole Genome Sequencing in Autism Families	Omics	01/03/2013
519	Resting	fMRI	11/08/2016
90	Genotyped IAN Samples	Omics	07/09/2013
91	NJLAGS Axiom Genotyping Array	Omics	07/16/2013
93	AGP genotyping (CNV)	Omics	09/06/2013
106	Longitudinal Sleep Study. H20 200. Channel set 2	EEG	11/07/2013
107	Longitudinal Sleep Study. H20 200. Channel set 3	EEG	11/07/2013
108	Longitudinal Sleep Study. AURA 200	EEG	11/07/2013
105	Longitudinal Sleep Study. H20 200. Channel set 1	EEG	11/07/2013
109	Longitudinal Sleep Study. AURA 400	EEG	11/07/2013
116	Gene Expression Analysis WG-6	Omics	01/07/2014
131	Jeste Lab UCLA ACEii: Charlie Brown and Sesame Street - Project 1	Eye Tracking	02/27/2014
132	Jeste Lab UCLA ACEii: Animacy - Project 1	Eye Tracking	02/27/2014
133	Jeste Lab UCLA ACEii: Mom Stranger - Project 2	Eye Tracking	02/27/2014
134	Jeste Lab UCLA ACEii: Face Emotion - Project 3	Eye Tracking	02/27/2014
145	AGRE/FMR1_Illumina.JHU	Omics	04/14/2014
146	AGRE/MECP2_Sanger.JHU	Omics	04/14/2014
147	AGRE/MECP2_Junior.JHU	Omics	04/14/2014
151	Candidate Gene Identification in familial Autism	Omics	06/09/2014
152	NJLAGS Whole Genome Sequencing	Omics	07/01/2014
154	Math Autism Study - Vinod Menon	fMRI	07/15/2014
155	Resting	fMRI	07/25/2014
156	Speech	fMRI	07/25/2014
159	Emotion	fMRI	07/25/2014
160	syllable contrast	EEG	07/29/2014
167	School-age naturalistic stimuli	Eye Tracking	09/19/2014
44	AGRE/Broad Affymetrix 5.0 Genotype Experiment	Omics	06/27/2011
45	Exome Sequencing of 20 Sporadic Cases of Autism Spectrum Disorder	Omics	07/15/2011

Collection - Add Experiment

Add Supporting Documentation

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URL:

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The Data Expected list for this Collection shows some raw data as missing. Contact the NDA Help Desk with any questions.

Please confirm that you will not be enrolling any more subjects and that all raw data has been collected and submitted.

Collection Updated

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.

[CMS] Error

[CMS]

Unable to change collection phase where targeted enrollment is less than 90%

You have requested to move the sharing dates for the following assessments:

Data Expected Item	Original Sharing Date	New Sharing Date

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Electrophysiological Response to Executive Control Training in Autism #2030 Collection State:Shared

General
Experiments (4)
Shared Data
Publications (17)
Data Expected (16)
Associated Studies (11)

Collection Title	Collection Investigators	Collection Description
Collection Title:	Electrophysiological Response to Executive Control Training in Autism
Collection Investigators:	Susan Faja
Collection Description:	Fifty to 96% of children with ASD demonstrate impaired executive control the ability to manage complex or conflicting information in the service of a goal. Development of appropriate executive control is relevant to public health because these skills are critical for success in school, the workplace, and social relationships. Executive impairments in ASD have been well documented, but have received virtually no intervention research attention. Further, development of neural systems underlying executive control in ASD and their contribution to social function and symptoms remain poorly understood. The proposed project has the following scientific goals: (1) to determine the neural basis of executive control in children with ASD using two well-established electrophysiological measures (K99 period); (2) to test whether individual electrophysiological differences in executive control are meaningfully related to the social function and symptoms of children with ASD (R00 period); and (3) to assess whether brief, focused training in executive control produces significant changes in the brain function and behavior of children with ASD (R00 period). These goals will be addressed using a common set of electrophysiological measures. During the mentored K99 phase, the neural response to executive control tasks by 30 children with ASD will be compared with 30 typically developing children. During the independent phase, 60 children with ASD will be randomly assigned to receive brief executive control training or to a wait list. Individual differences in neural response and their relation to social ability will be assessed in all children prior to intervention.
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	01/15/2013
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Collection State:	Shared
Blinded Clinical Trial:	No
Total Funded Amount:	$1,614,654.00
Subjects Shared:	145

{"values":[]}

{"values":[["DTI",5],["MRI",5],["fMRI",5]]}

{"values":[["Typical Control",9],["Autism Spectrum Severely Affected",47],["Not Defined",64],["Autism Spectrum Affected",44]]}

Loading Chart...

Funding Sources:

Funding Source Name	Funding Source URL
NIH - Extramural	None

Supporting Documentation:

File Name	File Type	Description	Audience
QA-notification.txt	Other	Quality Assurance Notification	Qualified Researchers

Grant Information:

Project Number	Project Title	Start Date	End Date	Planned Enrollment	Actual Enrollment	Organization	Funds Obligated
K99HD071966-01	Electrophysiological Response to Executive Control Training in Autism	07/01/2012	06/30/2018	95	174	BOSTON CHILDRENS HOSPITAL	$896,997.00
R00HD071966-03	Electrophysiological Response to Executive Control Training in Autism	07/01/2014	06/30/2018	95	174	BOSTON CHILDRENS HOSPITAL	$717,657.00

Clinical Trials:

helpcenter.collection.general-tab

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/nda/sharing-regimen.html), the embargo on Data Expected information is released.

Funding Source

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

Supporting Documentation

Users with Submission privileges, as well as Collection Owners, Program Officers, and those 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

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.
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.
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

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.
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.
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.
Collection Title

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

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

Contact NDA Help Desk

ID	Name	Created Date	Status	Type
331	Child ANT Flanker - EEG	07/08/2015	Approved	EEG
332	GoNogo - EEG	07/08/2015	Approved	EEG
1331	Child ANT Flanker - EEG	07/15/2019	Approved	EEG
1339	Cued Go-Nogo (shapes)	07/15/2019	Approved	EEG

helpcenter.collection.experiments-tab

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.

Contact NDA Help Desk

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.

Shared Data:

Title	Type	Number of Subjects
Autism Diagnostic Interview, Revised (ADI-R)	Clinical Assessments	101
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 3	Clinical Assessments	100
BRIEF-Parent	Clinical Assessments	136
BRIEF-Teacher	Clinical Assessments	69
Change Task	Clinical Assessments	136
Child Behavior Checklist (CBCL) 6-18	Clinical Assessments	135
Children's Memory Scale (CMS) - Ages 5 to 8	Clinical Assessments	59
Children's Memory Scale (CMS) - Ages 9 to 16	Clinical Assessments	80
Color Reading Interference (Stroop)	Clinical Assessments	138
Delay Discounting Task	Clinical Assessments	68
EEG Subject Files	Imaging	133
Hungry Donkey Task	Clinical Assessments	133
Inspection Time Task	Clinical Assessments	45
Research Subject	Clinical Assessments	131
SRS-2. Adult, Preschool and School Age	Clinical Assessments	68
Social Skills Improvement System Parent Scale	Clinical Assessments	68
Social Skills Improvement System Teacher Scale	Clinical Assessments	30
Vineland-II - Survey Form (2005)	Clinical Assessments	142
WASI-2	Clinical Assessments	145

helpcenter.collection.shared-data-tab

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.

Contact NDA Help Desk

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 ID	Study	Title	Journal	Authors	Date	Status
36644329	Create Study	Here''s the Story: Narrative Ability and Executive Function in Autism Spectrum Disorder.	Research in autism spectrum disorders	Greco, Gabriella; Choi, Boin; Michel, Kasey; Faja, Susan	March 1, 2023	Not Determined
35481725	Create Study	Beyond group differences: Exploring the preliminary signals of target engagement of an executive function training for autistic children.	Autism research : official journal of the International Society for Autism Research	Edmunds, Sarah R; MacNaughton, Gabrielle A; Rueda, M Rosario; Combita, Lina M; Faja, Susan	July 1, 2022	Not Determined
34474598	Create Study	A preliminary randomized, controlled trial of executive function training for children with autism spectrum disorder.	Autism : the international journal of research and practice	Faja, Susan; Clarkson, Tessa; Gilbert, Rachel; Vaidyanathan, Akshita; Greco, Gabriella; Rueda, M Rosario; Combita, Lina M; Driscoll, Kate	February 1, 2022	Not Determined
33982177	Create Study	Brief Report: Test-Retest Reliability of Cognitive, Affective, and Spontaneous Theory of Mind Tasks Among School-Aged Children with Autism Spectrum Disorder.	Journal of autism and developmental disorders	Altschuler, Melody R; Faja, Susan	April 1, 2022	Not Determined
32972212	Create Study	Inhibition in developmental disorders: A comparison of inhibition profiles between children with autism spectrum disorder, attention-deficit/hyperactivity disorder, and comorbid symptom presentation.	Autism : the international journal of research and practice	Cremone-Caira, Amanda; Trier, Katherine; Sanchez, Victoria; Kohn, Brooke; Gilbert, Rachel; Faja, Susan	January 1, 2021	Not Determined
31877490	Create Study	Test-retest reliability of the N2 event-related potential in school-aged children with autism spectrum disorder (ASD).	Clinical neurophysiology : official journal of the International Federation of Clinical Neurophysiology	Cremone-Caira, Amanda; Vaidyanathan, Akshita; Hyatt, Danielle; Gilbert, Rachel; Clarkson, Tessa; Faja, Susan	February 2020	Not Determined
31479914	Create Study	Relations between caregiver-report of sleep and executive function problems in children with autism spectrum disorder and attention-deficit/hyperactivity disorder.	Research in developmental disabilities	Cremone-Caira, Amanda; Buirkle, Julia; Gilbert, Rachel; Nayudu, Nikita; Faja, Susan	November 2019	Not Determined
30394786	Create Study	Variation in restricted and repetitive behaviors and interests relates to inhibitory control and shifting in children with autism spectrum disorder.	Autism : the international journal of research and practice	Faja, Susan; Nelson Darling, Laura	July 2019	Not Determined
29971661	Create Study	Measuring Individual Differences in Cognitive, Affective, and Spontaneous Theory of Mind Among School-Aged Children with Autism Spectrum Disorder.	Journal of autism and developmental disorders	Altschuler, Melody; Sideridis, Georgios; Kala, Shashwat; Warshawsky, Megan; Gilbert, Rachel; Carroll, Devon; Burger-Caplan, Rebecca; Faja, Susan	November 2018	Not Determined
27825750	Create Study	Neural and behavioral suppression of interfering flankers by children with and without autism spectrum disorder.	Neuropsychologia	Faja S, Clarkson T, Webb SJ	December 2016	Not Determined
26890821	Create Study	Executive function predicts the development of play skills for verbal preschoolers with autism spectrum disorders.	Autism research : official journal of the International Society for Autism Research	Faja, Susan; Dawson, Geraldine; Sullivan, Katherine; Meltzoff, Andrew N; Estes, Annette; Bernier, Raphael	December 1, 2016	Not Determined
26886246	Create Study	Face perception and learning in autism spectrum disorders.	Quarterly journal of experimental psychology (2006)	Webb, Sara Jane; Neuhaus, Emily; Faja, Susan	May 2017	Not Relevant
26075790	Create Study	Genome-wide significant risk associations for mucinous ovarian carcinoma.	Nature genetics	Kelemen, Linda E; Lawrenson, Kate; Tyrer, Jonathan; Li, Qiyuan; Lee, Janet M; Seo, Ji-Heui; Phelan, Catherine M; Beesley, Jonathan; Chen, Xiaoqing; Spindler, Tassja J; Aben, Katja K H; Anton-Culver, Hoda; Antonenkova, Natalia; Australian Cancer Study; Australian Ovarian Cancer Study Group; Ovarian Cancer Association Consortium	August 2015	Not Determined
24335116	Create Study	Reduced delay of gratification and effortful control among young children with autism spectrum disorders.	Autism : the international journal of research and practice	Faja, Susan; Dawson, Geraldine	January 2015	Not Relevant
23893954	Create Study	Reward-based decision making and electrodermal responding by young children with autism spectrum disorders during a gambling task.	Autism research : official journal of the International Society for Autism Research	Faja S, Murias M, Beauchaine TP, Dawson G	December 2013	Not Determined
23101741	Create Study	Early behavioral intervention is associated with normalized brain activity in young children with autism.	Journal of the American Academy of Child and Adolescent Psychiatry	Dawson, Geraldine; Jones, Emily J H; Merkle, Kristen; Venema, Kaitlin; Lowy, Rachel; Faja, Susan; Kamara, Dana; Murias, Michael; Greenson, Jessica; Winter, Jamie; Smith, Milani; Rogers, Sally J; Webb, Sara J	November 2012	Not Determined
22796987	Create Study	The responsiveness of biological motion processing areas to selective attention towards goals.	NeuroImage	Herrington J, Nymberg C, Faja S, Price E, Schultz R	October 15, 2012	Not Determined

helpcenter.collection.publications-tab

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.

Contact NDA Help Desk

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 Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
Research Subject and Pedigree	131	07/15/2013	131	11/15/2013	131	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 Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
Childrens Memory Scale (CMS)	135	07/15/2015	135	11/15/2015	135	Approved
ADOS	100	07/15/2013	100	11/15/2013	100	Approved
ADI-R	101	07/15/2013	101	11/15/2013	101	Approved
Social Responsiveness Scale (SRS)	68	07/15/2015	68	11/15/2015	68	Approved
Wechsler Abbreviated Scale of Intelligence (WASI)	145	07/15/2013	145	11/15/2013	145	Approved
Child Behavior Checklist (CBCL)	135	07/15/2013	135	11/15/2013	135	Approved
Social Skills Improvement System (SSIS)	68	07/15/2015	68	11/15/2015	68	Approved
Change Task	136	07/15/2013	136	11/15/2013	136	Approved
Hungry Donkey Task	133	07/15/2015	133	11/15/2015	133	Approved
Behavior Rating Inventory of Executive Function (BRIEF)	136	07/15/2013	136	11/15/2013	136	Approved
Vineland (Parent and Caregiver)	142	07/15/2013	142	11/15/2013	142	Approved
Color Reading Interference (Stroop)	138	07/15/2015	138	11/15/2015	138	Approved
EEG	138	07/15/2015	133	11/15/2015	133	Approved
Delay Discounting Task	68	07/15/2015	68	11/15/2015	68	Approved
Inspection Time Task	45	07/15/2015	45	11/15/2015	45	Approved

Structure not yet defined

No Status history for this Data Expected has been recorded yet

helpcenter.collection.data-expected-tab

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.

Contact NDA Help Desk

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 NameFilter by Study Name	AbstractFilter by Abstract	Collection/Study SubjectsFilter by Collection/Study Subjects	Data UsageFilter by Data Usage	StateFilter by State
Controls for SCCRIP	To establish a well characterized cohort for pediatric patients living with sickle cell disease	136/11185	Secondary Analysis	Private
Working Title: Differentiating Core Autism Symptomatology	Autism 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.	65/11144	Secondary Analysis	Private
Characterizing Auditory Hyperreactivity in Autism	Objective: To answer the following research questions: 1) What is the prevalence of auditory hyper-reactivity in ASD? 2) Does auditory hyper-reactivity severity change with age? and 3) What are the most common auditory stimuli reported to be bothersome? Research Design: Primarily descriptive secondary data analysis. Methods: Type of data: Questionnaire items regarding auditory hyper-reactivity will be filtered from: Autism Diagnostic Interview-Revised, Sensory Profile (all forms), Sensory Over-Responsivity Scale, and Sensory Experiences Questionnaire in addition to demographics (i.e., age, race, ethnicity, diagnoses). Analysis Plan: Descriptive statistics, tables and figures will be used to summarize the prevalence and severity of auditory hyper-reactivity by age. Linear regression modeling will be used to evaluate changes in auditory hyper-reactivity by age. If data is available for control subjects, statistical analyses will be conducted for means comparison (ASD vs. non-ASD).	101/7001	Secondary Analysis	Private
Investigating autism etiology and heterogeneity by decision tree algorithm	Autism 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.	65/3382	Secondary Analysis	Shared
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.	13/2110	Secondary Analysis	Private
Imbalanced social-communicative and restricted repetitive behavior subtypes in autism spectrum disorder exhibit different neural circuitry	Social-communication (SC) and restricted repetitive behaviors (RRB) are autism diagnostic symptom domains. SC and RRB severity can markedly differ within and between individuals and may be underpinned by different neural circuitry and genetic mechanisms. Modeling SC-RRB balance could help identify how neural circuitry and genetic mechanisms map onto such phenotypic heterogeneity. Here, we developed a phenotypic stratification model that makes highly accurate (97–99%) out-of-sample SC = RRB, SC > RRB, and RRB > SC subtype predictions. Applying this model to resting state fMRI data from the EU-AIMS LEAP dataset (n = 509), we find that while the phenotypic subtypes share many commonalities in terms of intrinsic functional connectivity, they also show replicable differences within some networks compared to a typically-developing group (TD). Specifically, the somatomotor network is hypoconnected with perisylvian circuitry in SC > RRB and visual association circuitry in SC = RRB. The SC = RRB subtype show hyperconnectivity between medial motor and anterior salience circuitry. Genes that are highly expressed within these networks show a differential enrichment pattern with known autism-associated genes, indicating that such circuits are affected by differing autism-associated genomic mechanisms. These results suggest that SC-RRB imbalance subtypes share many commonalities, but also express subtle differences in functional neural circuitry and the genomic underpinnings behind such circuitry.	77/1708	Secondary Analysis	Shared
Investigating possible biomarkers of autism in resting EEG	There are no clinically useful biomarkers of autism spectrum disorder (ASD). Electroencephalogram (EEG) can measure ongoing brain dynamics using cheap and widely available technology and is minimally invasive. As such, any measurement drived from EEG that is capable of serving as a biomarker for ASD would be hugely beneficial. Previous research has been conflicting and a large list of EEG measures have been suggested.	5/771	Secondary Analysis	Shared
Development of EEG dynamics throughout the lifespan	Combining data from across several datasets available on the NIMH data repository, multiple metrics of EEG dynamics were examined in a large cross sectional sample of healthy participants from across the lifespan. The goal was to examine changes in brain dynamics that occur across development.	5/551	Secondary Analysis	Shared
comparing EEG metrics during eyes closed versus eyes open rest in autism	Understanding the complex relationship between brain dynamics and mental disorders has proved difficult. Sample sizes have often been small, and brain dynamics have often been evaluated in only one state. Here, data obtained from the NIMH data archive were used to create a sample of 395 individuals with both eyes open and eyes closed resting state EEG data. All data were submitted to a standard pipeline to extract power spectra, peak alpha frequency, the slope of the 1/f curve, multi scale sample entropy, phase amplitude coupling, and intersite phase clustering. These data along with the survey data collected at the time of data collection form a valuable resource for interogating the relationship between brain state changes and autism diagnosis.	12/336	Secondary Analysis	Shared
Neural Correlates of Restricted Repetitive Behavior in Autism Spectrum Disorder	The objective of this study is to investigate relationships between restricted, repetitive behavior and neural circuitry alterations in autism spectrum disorder (ASD). The neural circuitry mediating restricted, repetitive behaviors is largely unknown, and consequently effective treatments are lacking. In order to perform these investigations we will use the National Database for Autism Research (NDAR) to access questionnaires and assessments related to repetitive behavior as well as MRI, fMRI, and DTI scans from subjects with autism spectrum disorder (ASD) and typically developing controls. We will perform between-group morphological comparisons, as well as assessments of brain connectivity (e.g. diffusion tractography). For subjects with ASD, we will also correlate neuroimaging data to repetitive behavior scores. This study will help to better understand the link between restricted, repetitive behavior and specific brain alterations	3/192	Secondary Analysis	Private
Critical test items to differentiate individuals with SPCD from those with ASD and typical controls	Social (pragmatic) communication disorder (SPCD) is a new category in the DSM-5. This study used IRT modelling to analyze archive data of item responses to the Social Communication Question-Lifetime (SCQ) from the National Database of Autism Research (NDAR), to select critical test items that could efficiently differentiate SPCD from ASD and TD. Methods: The SCQ records were downloaded from the NDAR. The item difficulty values and participants ability in the social communication and repetitive behavior and restricted interests were estimated through Winsteps. The items with difficulty values mostly matching the participants ability at the cut-off zones among three groups were selected. Result: The eight test items were identified for screening SPCD with 75% sensitivity. The specificity for differentiating SPCD from TD and ASD is 86.27% and 68.9% respectively. Conclusion: This study provides a short list of critical items that could be used to screen SPCD from TD and ASD.	3/151	Secondary Analysis	Private

* Data not on individual level

helpcenter.collection.associated-studies-tab

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.

Contact NDA Help Desk

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