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	Discovery and CRISPR validation of genetic factors associated with antipsychotic-induced weight gain and cardiometabolic risk	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

Funding Source:
URL:

To add an existing Data Structure, enter its title in the search bar. If you need to request changes, select the indicator "No, it requires changes to meet research needs" after selecting the Structure, and upload the file with the request changes specific to the selected Data Structure. Your file should follow the Request Changes Procedure. If the Data Structure does not exist, select "Request New Data Structure" and upload the appropriate zip file.

Use/Modify Existing Data Structure

Request New Data Structure

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Initial Submission Date:

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Data Structures:

Submit

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Not Eligible

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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Studies to Advance Autism Research and Treatment (STAART). #1854

General
Experiments (0)
Shared Data
Publications (254)
Associated Studies (12)

Collection Title	Collection Investigators	Collection Description
Collection Title:	Studies to Advance Autism Research and Treatment (STAART).
Collection Investigators:	Aylward, Elizabeth; Buxbaum, Joseph; Dawson, Geraldine; Hollander, Eric; Landa, Rebecca; Rodier, Patricia; Sigman, Marian; Tager-Flusberg, Helen
Collection Description:	The STAART Network is comprised of eight centers across the country. Most of these centers are evaluating and treating patients, as well as enrolling them into clinical trials.
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	10/04/2010
NIH Research Initiative:	NIMH Repository & Genomics Resource (NRGR)
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Blinded Clinical Trial:	No
Total Funded Amount:	$17,224,763.00
Subjects Shared:	2,088
Collection DOI:	10.15154/m0m2-gq48

{"values":[]}

{"values":[["Neurological Control",24],["Typical Control",382],["Autism Spectrum Mildly Affected",86],["Sibling Control",99],["Autism Spectrum Severely Affected",1672],["Autism Spectrum Affected",837],["Not Defined",19],["Parental Control",178]]}

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Funding Sources:

Funding Source Name	Funding Source URL
NIH - Extramural	None

Supporting Documentation:

File Name	File Type	Description	Audience
CPEA_STAART_data_release_10182010.pdf	Methods	Overview of the CPEA/STAART Data Organization	Qualified Researchers
CPEA_STAART_DATA_DICTIONARY.xlsx	Other	Data Definition of CPEA STAART Data Warehouse	Qualified Researchers
assessment_to_Version_variable_mapping.xlsx	Other	Assessment to Version Variable Mapping	Qualified Researchers

Grant Information:

Project Number	Title	Start Date	Original End Date	End Date	Planned Enrollment	Actual Enrollment	Organization	Funds Obligated
U54MH066397-01	Genotype and Phenotype of Response to Treatments of Autism	05/13/2003	04/30/2008	04/30/2008	379	389	UNIVERSITY OF ROCHESTER	$1,538,082.00
U54MH068172-01	Social & Language Deficits in Autism-Biology & Treament	05/13/2003	04/30/2008	04/30/2008	2766	475	UNIVERSITY OF CALIFORNIA LOS ANGELES	$1,851,019.00
U54MH066399-01	UW Autism Research Center of Excellence	05/13/2003	04/30/2008	04/30/2008	240	223	UNIVERSITY OF WASHINGTON	$5,001,997.00
U54MH066417-01	NEUROBIOLOGIC ORIGINS AND INNOVATIVE TREATMENT OF AUTISM	05/13/2003	04/30/2008	04/30/2010	246	358	HUGO W. MOSER RES INST KENNEDY KRIEGER	$7,086,470.00
U54MH066673-01	Greater New York Autism Research Center of Excellence	05/13/2003	04/30/2008	04/30/2008	806	496	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	$1,747,195.00

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 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, 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 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
No records found.

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

Shared Data:

Title	Type	Number of Subjects
Autism Diagnostic Interview, Revised (ADI-R)	Clinical Assessments	31
Autism Diagnostic Observation Schedule (ADOS)- Module 1	Clinical Assessments	35
Autism Diagnostic Observation Schedule (ADOS)- Module 2	Clinical Assessments	16
Autism Diagnostic Observation Schedule (ADOS)- Module 3	Clinical Assessments	13
CPEA STAART ABC 1994	Clinical Assessments	180
CPEA STAART ADI 1991 Toddler	Clinical Assessments	62
CPEA STAART ADI 2003	Clinical Assessments	816
CPEA STAART ADI-R 1995 Short	Clinical Assessments	2
CPEA STAART ADI-R 1998 Long	Clinical Assessments	155
CPEA STAART ADI-R 1999 Short	Clinical Assessments	71
CPEA STAART ADOS G Module 1	Clinical Assessments	60
CPEA STAART ADOS G Module 2	Clinical Assessments	36
CPEA STAART ADOS G Module 3	Clinical Assessments	66
CPEA STAART ADOS G Module 4	Clinical Assessments	10
CPEA STAART ADOS WPS Module 1	Clinical Assessments	697
CPEA STAART ADOS WPS Module 2	Clinical Assessments	181
CPEA STAART ADOS WPS Module 3	Clinical Assessments	308
CPEA STAART ADOS WPS Module 4	Clinical Assessments	180
CPEA STAART CBCL 1.5 to 5	Clinical Assessments	141
CPEA STAART CBCL 6 to 18	Clinical Assessments	138
CPEA STAART CTOPP Ages 5 to 6	Clinical Assessments	13
CPEA STAART CTOPP Ages 7 to 24	Clinical Assessments	321
CPEA STAART CYBOCS 1999	Clinical Assessments	164
CPEA STAART EVT	Clinical Assessments	27
CPEA STAART Expressive One Word Pic Vocab Test	Clinical Assessments	272
CPEA STAART General Variables	Clinical Assessments	2053
CPEA STAART Leiter Scales	Clinical Assessments	139
CPEA STAART MacArthur-Bates Words and Gestures	Clinical Assessments	171
CPEA STAART MacArthur-Bates Words and Sentences	Clinical Assessments	101
CPEA STAART Mullen	Clinical Assessments	757
CPEA STAART P-DAS	Clinical Assessments	5
CPEA STAART PDDBI	Clinical Assessments	19
CPEA STAART PLS_4	Clinical Assessments	90
CPEA STAART PPVT SUMMARY 2004	Clinical Assessments	55
CPEA STAART PPVT Version 3	Clinical Assessments	494
CPEA STAART Reynell	Clinical Assessments	53
CPEA STAART S-DAS	Clinical Assessments	5
CPEA STAART SRS	Clinical Assessments	19
CPEA STAART Sensory Profile 3 to 10 Years	Clinical Assessments	239
CPEA STAART Sensory Profile 7 - 36 Months	Clinical Assessments	41
CPEA STAART Stanford Binet 4th Edition	Clinical Assessments	1
CPEA STAART Stanford Binet 5th Edition	Clinical Assessments	63
CPEA STAART Vineland I	Clinical Assessments	1322
CPEA STAART WAIS 3	Clinical Assessments	55
CPEA STAART WASI	Clinical Assessments	258
CPEA STAART WISC 3	Clinical Assessments	40
CPEA STAART WISC 4	Clinical Assessments	206
CPEA STAART WPPSI 2y6m to 3y11m	Clinical Assessments	16
DAS-II: Differential Ability Scales 2nd Ed. School Age	Clinical Assessments	16
DAS-II:Differential Ability Scales 2nd Ed. Early Years	Clinical Assessments	4
Mullen Scales of Early Learning	Clinical Assessments	33
Social Communication Questionnaire (SCQ) - Current Form	Clinical Assessments	1
Social Communication Questionnaire (SCQ) - Lifetime	Clinical Assessments	7

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 Study is viewable and searchable publicly regardless of the user's role or whether the user has an NDA account. A Shared NDA Study does not necessarily mean that data 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.

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
41251762	Create Study	EEG neurosubtyping of infants predicts language trajectories.	Journal of neural transmission (Vienna, Austria : 1996)	Blanco-Gomez, Gabriel; Wright, Nicky; O'Reilly, Christian; Webb, Sara Jane; Elsabbagh, Mayada; BASIS Team	November 18, 2025	Not Determined
37805500	Create Study	EEG functional connectivity in infants at elevated familial likelihood for autism spectrum disorder.	Molecular autism	O'Reilly, Christian; Huberty, Scott; van Noordt, Stefon; Desjardins, James; Wright, Nicky; Scorah, Julie; Webb, Sara Jane; Elsabbagh, Mayada; BASIS team	October 7, 2023	Not Determined
37292600	Create Study	EEG functional connectivity in infants at elevated familial risk for autism spectrum disorder.	Research square	O'Reilly, Christian; Huberty, Scott; van Noordt, Stefon; Desjardins, James; Wright, Nicky; Scorah, Julie; Webb, Sara Jane; BASIS team; Elsabbagh, Mayada	May 15, 2023	Not Determined
36970398	Create Study	Comparing a Practice-Based Model with a Research-Based Model of social skills interventions for children with autism in schools.	Research in autism spectrum disorders	Locke, Jill; Rotheram-Fuller, Erin; Harker, Colleen; Kasari, Connie; Mandell, David S	June 1, 2019	Not Determined
36943905	Create Study	Neural mechanisms of language development in infancy.	Infancy : the official journal of the International Society on Infant Studies	Huberty, Scott; O'Reilly, Christian; Carter Leno, Virginia; Steiman, Mandy; Webb, Sara; Elsabbagh, Mayada; BASIS Team	January 1, 2023	Not Determined
36443015	Create Study	Relationship of Impairments in Associative Learning With Intellectual Disability and Cerebellar Hypoplasia in Autistic Children.	Neurology	Welsh, John P; Munson, Jeffrey; St John, Tanya; Meehan, Christina N; Tran Abraham, Elise; Reitz, Frederick B; Begay, K Kawena; Dager, Stephen R; Estes, Annette M	February 7, 2023	Not Determined
34504056	Create Study	Sterol and lipid analyses identifies hypolipidemia and apolipoprotein disorders in autism associated with adaptive functioning deficits.	Translational psychiatry	Tierney, Elaine; Remaley, Alan T; Thurm, Audrey; Jager, Leah R; Wassif, Christopher A; Kratz, Lisa E; Bailey-Wilson, Joan E; Bukelis, Irena; Sarphare, Geeta; Jung, Eun Sol; Brand, Boudewien; Noah, Kelly K; Porter, Forbes D	September 9, 2021	Not Determined
34309743	Create Study	The Early Start Denver Model Intervention and Mu Rhythm Attenuation in Autism Spectrum Disorders.	Journal of autism and developmental disorders	Aaronson, Benjamin; Estes, Annette; Rogers, Sally J; Dawson, Geraldine; Bernier, Raphael	July 1, 2022	Not Determined
32333300	Create Study	Brief Report: Performance-Based Executive Functioning Abilities are Associated with Caregiver Report of Adaptive Functioning in Autism Spectrum Disorder.	Journal of autism and developmental disorders	Udhnani, Manisha D; Kenworthy, Lauren; Wallace, Gregory L; Yerys, Benjamin E	December 2020	Not Determined
32140983	Create Study	Sleep Problems and Trajectories of Restricted and Repetitive Behaviors in Children with Neurodevelopmental Disabilities.	Journal of autism and developmental disorders	MacDuffie, Katherine E; Munson, Jeffrey; Greenson, Jessica; Ward, Teresa M; Rogers, Sally J; Dawson, Geraldine; Estes, Annette	November 1, 2020	Not Determined
30628809	Create Study	Early motor abilities in infants at heightened versus low risk for ASD: A Baby Siblings Research Consortium (BSRC) study.	Journal of abnormal psychology	Iverson, Jana M; Shic, Frederick; Wall, Carla A; Chawarska, Katarzyna; Curtin, Suzanne; Estes, Annette; Gardner, Judith M; Hutman, Ted; Landa, Rebecca J; Levin, April R; Libertus, Klaus; Messinger, Daniel S; Nelson, Charles A; Ozonoff, Sally; Sacrey, Lori-Ann R; Sheperd, Kelly; Stone, Wendy L; Tager-Flusberg, Helen B; Wolff, Jason J; Yirmiya, Nurit; Young, Gregory S	January 2019	Not Determined
30506566	Create Study	The dysregulation profile in preschoolers with and without a family history of autism spectrum disorder.	Journal of child psychology and psychiatry, and allied disciplines	Miller, Meghan; Iosif, Ana-Maria; Young, Gregory S; Bell, Laura J; Schwichtenberg, A J; Hutman, Ted; Ozonoff, Sally	May 2019	Not Determined
28970862	Create Study	Utility of the CBCL DSM-Oriented Scales in Assessing Emotional Disorders in Youth with Autism.	Research in autism spectrum disorders	Magyar, Caroline I; Pandolfi, Vincent	May 2017	Not Determined
28889315	Create Study	Brief Report: Executive Function as a Predictor of Academic Achievement in School-Aged Children with ASD.	Journal of autism and developmental disorders	St John, Tanya; Dawson, Geraldine; Estes, Annette	January 2018	Not Determined
28838582	Create Study	Cost Offset Associated With Early Start Denver Model for Children With Autism.	Journal of the American Academy of Child and Adolescent Psychiatry	Cidav Z, Munson J, Estes A, Dawson G, Rogers S, Mandell D	September 2017	Not Determined
28371492	Create Study	I tawt i taw a puddy tat: Gestures in canary row narrations by high-functioning youth with autism spectrum disorder.	Autism research : official journal of the International Society for Autism Research	Silverman, Laura B; Eigsti, Inge-Marie; Bennetto, Loisa	August 2017	Not Determined
27940149	Create Study	Close genetic relationships between a spousal pair with autism-affected children and high minor allele content in cases in autism-associated SNPs.	Genomics	Zhu Z, Lu X, Yuan D, Huang S	January 2017	Not Determined
27620949	Create Study	Characteristics of socially successful elementary school-aged children with autism.	Journal of child psychology and psychiatry, and allied disciplines	Locke, Jill; Williams, Justin; Shih, Wendy; Kasari, Connie	January 2017	Not Determined
27417857	Create Study	Non-ASD outcomes at 36 months in siblings at familial risk for autism spectrum disorder (ASD): A baby siblings research consortium (BSRC) study.	Autism research : official journal of the International Society for Autism Research	Charman, Tony; Young, Gregory S; Brian, Jessica; Carter, Alice; Carver, Leslie J; Chawarska, Katarzyna; Curtin, Suzanne; Dobkins, Karen; Elsabbagh, Mayada; Georgiades, Stelios; Hertz-Picciotto, Irva; Hutman, Ted; Iverson, Jana M; Jones, Emily J; Landa, Rebecca; Macari, Suzanne; Messinger, Daniel S; Nelson, Charles A; Ozonoff, Sally; Saulnier, Celine; Stone, Wendy L; Tager-Flusberg, Helen; Webb, Sara Jane; Yirmiya, Nurit; Zwaigenbaum, Lonnie	January 2017	Not Determined
27358719	Create Study	Commentary: sex difference differences? A reply to Constantino.	Molecular autism	Messinger, Daniel S; Young, Gregory S; Webb, Sara Jane; Ozonoff, Sally; Bryson, Susan E; Carter, Alice; Carver, Leslie; Charman, Tony; Chawarska, Katarzyna; Curtin, Suzanne; Dobkins, Karen; Hertz-Picciotto, Irva; Hutman, Ted; Iverson, Jana M; Landa, Rebecca; Nelson, Charles A; Stone, Wendy L; Tager-Flusberg, Helen; Zwaigenbaum, Lonnie	2016	Not Relevant
27178863	Create Study	Early event-related potentials to emotional faces differ for adults with autism spectrum disorder and by serotonin transporter genotype.	Clinical neurophysiology : official journal of the International Federation of Clinical Neurophysiology	Faja, Susan; Dawson, Geraldine; Aylward, Elizabeth; Wijsman, Ellen M; Webb, Sara Jane	June 2016	Not Determined
26966285	Create Study	Race, disability, and grade: Social relationships in children with autism spectrum disorders.	Autism : the international journal of research and practice	Azad, Gazi F; Locke, Jill; Kasari, Connie; Mandell, David S	January 2017	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 2016	Not Determined
26881074	Create Study	Theory of Mind Indexes the Broader Autism Phenotype in Siblings of Children with Autism at School Age.	Autism research and treatment	Tsang, Tawny; Gillespie-Lynch, Kristen; Hutman, Ted	January 2016	Not Determined
26567264	Create Study	Social network analysis of children with autism spectrum disorder: Predictors of fragmentation and connectivity in elementary school classrooms.	Autism : the international journal of research and practice	Anderson, Ariana; Locke, Jill; Kretzmann, Mark; Kasari, Connie; AIR-B Network	August 2016	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.

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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	DOIFilter by DOI	AbstractFilter by Abstract	Collection/Study SubjectsFilter by Collection/Study Subjects	Data UsageFilter by Data Usage	StateFilter by State
Examining the validity of the use of ratio IQs in psychological assessments	10.15154/1522624	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.	1007/17423	Secondary Analysis	Shared
The importance of low IQ to early diagnosis of autism	10.15154/1528140	Some individuals can flexibly adapt to life’s changing demands while others, in particular those with Autism Spectrum Disorder (ASD), find it challenging. The origin of early individual differences in cognitive abilities, the putative tools with which to navigate novel information in life, including in infants later diagnosed with ASD remains unexplored. Moreover, the role of intelligence quotient (IQ) vis-à-vis core features of autism remains debated. We systematically investigate the contribution of early IQ in future autism outcomes in an extremely large, population-based study of 8,000 newborns, infants, and toddlers from the US between 2 and 68 months with over 15,000 cross-sectional and longitudinal assessments, and for whom autism outcomes are ascertained or ruled out by about 2-4 years. This population is representative of subjects involved in the National Institutes of Health (NIH)-funded research, mainly on atypical development, in the US. Analyses using predetermined age bins showed that IQ scores are consistently lower in ASD relative to TD at all ages (p<0.001), and IQ significantly correlates with calibrated severity scores (total CSS, as well as non-verbal and verbal CSS) on the ADOS. Note, VIQ is no better than the full-scale IQ to predict ASD cases. These findings raise new, compelling questions about potential atypical brain circuitry affecting performance in both verbal and nonverbal abilities and that precede an ASD diagnosis. This study is the first to establish prospectively that low early IQ is a major feature of ASD in early childhood.	8/6323	Secondary Analysis	Shared
The striatal matrix compartment is expanded in autism spectrum disorder.	10.15154/khn8-jf08	Background: Autism spectrum disorder (ASD) is the second-most common neurodevelopmental disorder in childhood. This complex developmental disorder that manifests with restricted interests, repetitive behaviors, and difficulties in communication and social awareness. The inherited and acquired causes of ASD impact many and diverse brain regions, challenging efforts to identify a shared neuroanatomical substrate for this range of symptoms. The striatum and its connections are among the most implicated sites of abnormal structure and/or function in ASD. Striatal projection neurons develop in segregated tissue compartments, the matrix and striosome, that are histochemically, pharmacologically, and functionally distinct. Immunohistochemical assessment of ASD and animal models of autism described abnormal matrix:striosome volume ratios, with an possible shift from striosome to matrix volume. Shifting the matrix:striosome ratio could result from expansion in matrix, reduction in striosome, spatial redistribution of the compartments, or a combination of these changes. Each type of ratio-shifting abnormality may predispose to ASD but yield different combinations of ASD features. Methods: We developed a cohort of 426 children and adults (213 matched ASD-control pairs) and performed connectivity-based parcellation (diffusion tractography) of the striatum. This identified voxels with matrix-like and striosome-like patterns of structural connectivity. Results: Matrix-like volume was increased in ASD, with no evident change in the volume or organization of the striosome-like compartment. The inter-compartment volume difference (matrix minus striosome) within each individual was 31% larger in ASD. Matrix-like volume was increased in both caudate and putamen, and in somatotopic zones throughout the rostral-caudal extent of the striatum. Subjects with moderate elevations in ADOS (Autism Diagnostic Observation Schedule) scores had increased matrix-like volume, but those with highly elevated ADOS scores had 3.7-fold larger increases in matrix-like volume. Conclusions: Matrix and striosome are embedded in distinct structural and functional networks, suggesting that compartment-selective injury or maldevelopment may mediate specific and distinct clinical features. Previously, assessing the striatal compartments in humans required post mortem tissue. Striatal parcellation provides a means to assess neuropsychiatric diseases for compartment-specific abnormalities in vivo. While this ASD cohort had increased matrix-like volume, other mechanisms that shift the matrix:striosome ratio may also increase the chance of developing the diverse social, sensory, and motor phenotypes of ASD.	1/2166	Secondary Analysis	Shared
Psychometric Analysis of the Social Communication Questionnaire Using an Item-Response Theory Framework: Implications for the Use of the Lifetime and Current Forms	10.15154/1158938	The Social Communication Questionnaire (SCQ) was developed as a screener of Autism Spectrum Disorder (ASD). To date, the majority of the SCQ utility studies focused on its external validity (e.g., ROC curve analyses), but very few have addressed the internal validity issues. With samples consisting of 2,134 individuals available from the National Database for Autism Research (NDAR), the current study examined the factor structure, item-level characteristics, and measurement equivalence of the SCQ forms (i.e., Lifetime form and Current form) using both the classical true score theory and the item response theory (IRT). While our findings indicate sufficient psychometric properties of the SCQ Lifetime form, measurement issues emerged with respect to the SCQ Current form. These issues include lower internal consistencies, a weaker factor structure, lower item discriminations, significant pseudo-guessing effects, and subscale-level measurement bias. Thus, we caution researchers and clinicians about the use of the SCQ Current form. In particular, it seems inappropriate to use the Current form as an alternative to the Lifetime form among children younger than 5 years old or under other special situations (e.g., teacher-report data), although such practices were advised by the publisher of the SCQ. Instead, we recommend modifying the wording of the Lifetime form items rather than switching to the Current form where a 3-month timeframe is specified for responding to SCQ items. Future studies may consider investigating the association between the temporality of certain behaviors and the individual’s potential for being diagnosed with ASD, as well as the age neutrality of the SCQ.	6/2054	Secondary Analysis	Shared
Unravelling the Collective Diagnostic Power Behind the Features in the Autism Diagnostic Observation Schedule	10.15154/1421921	Background: Autism is a group of heterogeneous disorders defined by deficits in social interaction and communication. Typically, diagnosis depends on the results of a behavioural examination called the Autism Diagnostic Observation Schedule (ADOS). Unfortunately, administration of the ADOS exam is time-consuming and requires a significant amount of expert intervention, leading to delays in diagnosis and access to early intervention programs. The diagnostic power of each feature in the ADOS exam is currently unknown. Our hypothesis is that certain features could be removed from the exam without a significant reduction in diagnostic accuracy, sensitivity or specificity. Objective: Determine the smallest subset of predictive features in ADOS module-1 (an exam variant for patients with minimal verbal skills). Methodology: ADOS module-1 datasets were acquired from the Autism Genetic Resource Exchange and the National Database for Autism Research. The datasets contained 2572 samples with the following labels: autism (1763), autism spectrum (513), and non-autism (296). The datasets were used as input to 4 different cost-sensitive classifiers in Weka (functional trees, LADTree, logistic model trees, and PART). For each classifier, a 10-fold cross validation was preformed and the number of predictive features, accuracy, sensitivity, and specificity was recorded. Results & Conclusion: Each classifier resulted in a reduction of the number of ADOS features required for autism diagnosis. The LADtree classifier was able to obtain the largest reduction, utilizing only 10 of 29 ADOS module-1 features (96.8% accuracy, 96.9% sensitivity, and 95.9% specificity). Overall, these results are a step towards a more efficient behavioural exam for autism diagnosis.	35/1832	Secondary Analysis	Shared
Imbalanced social-communicative and restricted repetitive behavior subtypes in autism spectrum disorder exhibit different neural circuitry	10.15154/1524418	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.	2/1708	Secondary Analysis	Shared
Automated Autism Diagnosis using Phenotypic and Genotypic Attributes: Phase I	10.15154/1343559	The ultimate goal of this project is to develop a predictive system that can automate the diagnosis process for autism using phenotypic and genotypic attributes for classification. At this time, only a first phase is being pursued: starting with scores from Autism Diagnostic Observation Schedule (ADOS) reports, use data-mining techniques to select the smallest set of the most informative evaluation points that can lead to similar behavioral diagnoses as using all report features. The effort began in March, 2016 after data access to NDAR was granted. This report describes the results from that date through the end of December 2016.	33/1045	Secondary Analysis	Shared
Revising the Social Communication Questionnaire scoring procedures for Autism Spectrum Disorder and potential Social Communication Disorder	10.15154/1195993	In analyzing data from the National Database for Autism Research, we examine revising the Social Communication Questionnaire (SCQ), a commonly used screening instrument for Autism Spectrum Disorder. A combination of Item Response Theory and Mokken scaling techniques were utilized to achieve this and abbreviated scoring of the SCQ is suggested. The psychometric sensitivity of this abbreviated SCQ was examined via bootstrapped Receiver Operator Characteristic (ROC) curve analyses. Additionally, we examined the sensitivity of the abbreviated and total scaled SCQ as it relates to a potential diagnosis of Social (Pragmatic) Communication Disorder (SCD). As SCD is a new disorder introduced with the fifth edition of the Diagnostic and Statistical Manual (DSM-5), we identified individuals with potential diagnosis of SCD among individuals with ASD via mixture modeling techniques using the same NDAR data. These analyses revealed two classes or clusters of individuals when considering the two core areas of impairment among individuals with ASD: social communication and restricted, repetitive patterns of behavior.	7/889	Secondary Analysis	Shared
Predictors of self-injurious behaviour exhibited by individuals with autism spectrum disorder	10.15154/1226464	Presence of an autism spectrum disorder is a risk factor for development of self-injurious behaviour (SIB) exhibited by individuals with developmental disorders. The most salient SIB risk factors historically studied within developmental disorders are level of intellectual disability, communication deficits and presence of specific genetic disorders. Recent SIB research has expanded the search for risk factors to include less commonly studied variables for people with developmental disorders: negative affect, hyperactivity and impulsivity.	220/589	Secondary Analysis	Shared
Face-processing performance is an independent predictor of social affect as measured by the Autism Diagnostic Observation Schedule across large-scale datasets	10.15154/1520631	Face-processing deficits, while not required for the diagnosis of Autism Spectrum Disorder (ASD), have been associated with impaired social skills—a core feature of ASD; however, the strength and prevalence of this relationship remains unclear. Across 445 participants from the NIMH Data Archive, we examined the relationship between Benton Face Recognition Test (BFRT) performance and Autism Diagnostic Observation Schedule-Social Affect (ADOS-SA) scores. Lower BFRT scores (worse face-processing performance) were associated with higher ADOS-SA scores (higher ASD severity)–a relationship that held after controlling for other factors associated with face processing, i.e., age, sex, and IQ. These findings underscore the utility of face discrimination, not just recognition of facial emotion, as a key covariate for the severity of symptoms that characterize ASD.	2/445	Secondary Analysis	Shared
The Sensitivity and Specificity of the Social Communication Questionnaire for Autism Spectrum Disorder with Respect to Age	10.15154/1195992	Scientific Abstract The Social Communication Questionnaire (SCQ) assesses communication skills and social functioning in screening for symptoms of autism-spectrum disorder (ASD). The SCQ is recommended for individuals between 4 to 40 years with a cutoff score of 15 for referral. Mixed findings have been reported regarding the recommended cutoff score’s ability to accurately classify an individual as at-risk for ASD (sensitivity) versus an individual as not at-risk for ASD (specificity). Based on a sample from the National Database for Autism Research (n=344; age: 1.58 to 25.92 years old), the present study examined the SCQ’s sensitivity versus specificity across a range of ages. We recommend that the cutoff scores for the SCQ be re-evaluated with age as a consideration. Lay Abstract The age neutrality of the Social Communication Questionnaire (SCQ) was examined as a common screener for ASD. Mixed findings have been reported regarding the recommended cutoff score’s ability to accurately classify an individual as at-risk for ASD (sensitivity) versus accurately classifying an individual as not at-risk for ASD (specificity). With a sample from the National Database for Autism Research, the present study examined the SCQ’s sensitivity versus specificity. Analyses indicated that the actual sensitivity and specificity scores were lower than initially reported by the creators of the SCQ.	3/339	Secondary Analysis	Shared
Cortico-Basal Ganglia Brain Structure and Links to Restricted, Repetitive Behavior in Autism Spectrum Disorder	10.15154/1528130	Restricted repetitive behavior (RRB) is one of two criteria domains required for the diagnosis of autism spectrum disorder (ASD). Neuroimaging is widely used to study brain alterations associated with ASD and the domain of social and communication deficits, but there has been less work regarding alterations associated with RRB. In this study we utilized neuroimaging data available from the National Database for Autism Research to assess volume in the basal ganglia and cerebellum, as well as microstructure in basal ganglia and cerebellar white matter tracts in ASD. We also investigated whether these measures differed between males and females with ASD, and how these factors correlated with clinical measures of RRB from the same individuals. We found that individuals with ASD had significant differences in free-water corrected fractional anisotropy (FAT) and free-water in cortico-basal ganglia white matter tracts, but that these measures did not differ between males versus females with ASD. Moreover, both FAT and free-water in these tracts were significantly correlated with measures of RRB. Despite no differences in volumetric measures in basal ganglia and cerebellum, these findings suggest the links between RRB and brain structure are within specific cortico-basal ganglia white matter tracts.	1/192	Secondary Analysis	Shared

* Data not on individual level

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Collection - Associated Studies

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