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

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

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Initial Submission Date:

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Data Structures:

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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.

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[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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Yale Autism Center of Excellence: Mechanisms of Social Engagement in the Autism Spectrum Disorders #8

General
Experiments (1)
Shared Data
Publications (51)
Associated Studies (10)

Collection Title	Collection Investigators	Collection Description
Collection Title:	Yale Autism Center of Excellence: Mechanisms of Social Engagement in the Autism Spectrum Disorders
Collection Investigators:	Fred Volkmar
Collection Description:	The Yale ACE consists of 5 project areas and 3 core resources. Projects I, II, and III focus on the same cohort of 12- to 24-month old infants with ASD followed up longitudinally. Project IV involves structural and functional neuroimaging protocols on a group of 10-year-olds with ASD who were extensively characterized at the age of 2 and 4 years. Project V includes cytogenetic studies of the infants evaluated in Projects I, II, and III, and the ASD children evaluated in Project IV. The Administrative Core is charged with planning, oversight, and management of the Yale ACE. The Assessment Core ensures that all project areas have access to well-characterized patients, family members and control populations, from a behavioral/phenotypic standpoint and from a medical/pediatric and genetics standpoint. The Data Management and Analysis provides data management and data analytic expertise across projects.
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	04/01/2008
NIH Research Initiative:	Autism Centers of Excellence (ACE)
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Blinded Clinical Trial:	No
Total Funded Amount:	$12,080,414.00
Subjects Shared:	718

{"values":[]}

{"values":[["Eye Tracking",135]]}

{"values":[["Parental Control",1],["Neurological Control",36],["Autism Spectrum Mildly Affected",28],["Not Defined",99],["Sibling Control",2],["Autism Spectrum Affected",269],["Typical Control",4],["Autism Spectrum Severely Affected",219]]}

Loading Chart...

Funding Sources:

Funding Source Name	Funding Source URL
NIH - Extramural	None
NIH - Contract	None

Supporting Documentation:

File Name	File Type	Description	Audience
readme.txt	Other	Test supporting documentation	Qualified Researchers

Grant Information:

Project Number	Project Title	Start Date	End Date	Planned Enrollment	Actual Enrollment	Organization	Funds Obligated
P50MH081756-01	Mechanisms of Social Engagement in Autism Spectrum Disorders	04/01/2008	03/31/2014	1272	793	YALE UNIVERSITY	$12,080,414.00

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
165	Caregiver stimuli	09/19/2014	Approved	Eye Tracking

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
Adapted ADOS Module 1	Clinical Assessments	1
Autism Diagnostic Interview, Revised (ADI-R)	Clinical Assessments	125
Autism Diagnostic Observation Schedule (ADOS)- Module 1	Clinical Assessments	144
Autism Diagnostic Observation Schedule (ADOS)- Module 2	Clinical Assessments	63
Autism Diagnostic Observation Schedule (ADOS)- Module 3	Clinical Assessments	21
CHARGE Family Characteristics Questionnaire	Clinical Assessments	169
CHARGE Medical History	Clinical Assessments	175
CHARGE Physical Exam	Clinical Assessments	90
CSBS DP Behavior Sample	Clinical Assessments	195
DAS-II: Differential Ability Scales 2nd Ed. School Age	Clinical Assessments	14
DAS-II:Differential Ability Scales 2nd Ed. Early Years	Clinical Assessments	4
Eye Tracking Subject-Experiment	Imaging	122
Genomics Sample	Genomics	473
Genomics Subject	Genomics	473
Intervention History Full Version	Clinical Assessments	131
Karyotype	Clinical Assessments	98
MacArthur-Bates CDI - Words and Gestures Form	Clinical Assessments	157
MacArthur-Bates CDI - Words and Sentences Form	Clinical Assessments	59
Modified CHARGE Family Medical History (2007)	Clinical Assessments	143
Modified CHARGE Family Medical History (rev July 2007)	Clinical Assessments	17
Mullen Scales of Early Learning	Clinical Assessments	194
NIMH Medical History Questionnaire	Clinical Assessments	166
Preschool Language Scale, Fourth Edition (PLS-4)	Clinical Assessments	103
Processed MRI Data	Imaging	2
Social Communication Questionnaire (SCQ) - Current Form	Clinical Assessments	2
Social Communication Questionnaire (SCQ) - Lifetime	Clinical Assessments	21
Social Responsiveness Scale (SRS) - Adult/Self Version	Clinical Assessments	33
Vineland-II - Parent and Caregiver Rating Form (2005)	Clinical Assessments	49
Vineland-II - Survey Form (2005)	Clinical Assessments	141

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
38896553	Create Study	Family history of psychiatric conditions and development of siblings of children with autism.	Autism research : official journal of the International Society for Autism Research	Bellia, Giselle; Chang, Joseph; Liew, Zeyan; Vernetti, Angelina; Macari, Suzanne; Powell, Kelly; Chawarska, Katarzyna	August 1, 2024	Not Determined
35244219	Create Study	Attention to audiovisual speech does not facilitate language acquisition in infants with familial history of autism.	Journal of child psychology and psychiatry, and allied disciplines	Chawarska, Katarzyna; Lewkowicz, David; Feiner, Hannah; Macari, Suzanne; Vernetti, Angelina	December 1, 2022	Not Determined
33009972	Create Study	Visual Traces of Language Acquisition in Toddlers with Autism Spectrum Disorder During the Second Year of Life.	Journal of autism and developmental disorders	Habayeb, Serene; Tsang, Tawny; Saulnier, Celine; Klaiman, Cheryl; Jones, Warren; Klin, Ami; Edwards, Laura A	July 1, 2021	Not Determined
32374399	Create Study	Atypical Value-Driven Selective Attention in Young Children With Autism Spectrum Disorder.	JAMA network open	Wang, Quan; Chang, Joseph; Chawarska, Katarzyna	May 1, 2020	Not Determined
32061926	Create Study	Context-Specific Dyadic Attention Vulnerabilities During the First Year in Infants Later Developing Autism Spectrum Disorder.	Journal of the American Academy of Child and Adolescent Psychiatry	Macari, Suzanne; Milgramm, Anna; Reed, Jessa; Shic, Frederick; Powell, Kelly K; Macris, Deanna; Chawarska, Katarzyna	January 1, 2021	Not Determined
31541000	Create Study	Chemogenetic Inhibition of the Amygdala Modulates Emotional Behavior Expression in Infant Rhesus Monkeys.	eNeuro	Raper, Jessica; Murphy, Lauren; Richardson, Rebecca; Romm, Zoe; Kovacs-Balint, Zsofia; Payne, Christa; Galvan, Adriana	January 2019	Not Determined
31468735	Create Study	Promoting social attention in 3-year-olds with ASD through gaze-contingent eye tracking.	Autism research : official journal of the International Society for Autism Research	Wang, Quan; Wall, Carla A; Barney, Erin C; Bradshaw, Jessica L; Macari, Suzanne L; Chawarska, Katarzyna; Shic, Frederick	January 1, 2020	Not Determined
31012398	Create Study	Development of attention from birth to 5 months in infants at risk for autism spectrum disorder.	Development and psychopathology	Bradshaw, Jessica; Klin, Ami; Evans, Lindsey; Klaiman, Cheryl; Saulnier, Celine; McCracken, Courtney	May 2020	Not Determined
29651331	Create Study	Operationalizing atypical gaze in toddlers with autism spectrum disorders: a cohesion-based approach.	Molecular autism	Wang, Quan; Campbell, Daniel J; Macari, Suzanne L; Chawarska, Katarzyna; Shic, Frederick	January 2018	Not Determined
29181689	Create Study	Do Parents and Clinicians Agree on Ratings of Autism-Related Behaviors at 12 Months of Age? A Study of Infants at High and Low Risk for ASD.	Journal of autism and developmental disorders	Macari, Suzanne L; Wu, Grace C; Powell, Kelly K; Fontenelle 4th, Scuddy; Macris, Deanna M; Chawarska, Katarzyna	April 1, 2018	Not Determined
28317113	Create Study	Temperamental markers in toddlers with autism spectrum disorder.	Journal of child psychology and psychiatry, and allied disciplines	Macari, Suzanne L; Koller, Judah; Campbell, Daniel J; Chawarska, Katarzyna	July 2017	Not Determined
27855484	Create Study	Mechanisms of Diminished Attention to Eyes in Autism.	The American journal of psychiatry	Moriuchi JM, Klin A, Jones W	January 2017	Not Determined
27289132	Create Study	The relationship between autism symptoms and arousal level in toddlers with autism spectrum disorder, as measured by electrodermal activity.	Autism : the international journal of research and practice	Prince, Emily Barbara; Kim, Elizabeth S; Wall, Carla Anne; Gisin, Eugenia; Goodwin, Matthew S; Simmons, Elizabeth Schoen; Chawarska, Kaisa; Shic, Frederick	May 2017	Not Determined
27015716	Create Study	Eye Tracking as a Behavioral Biomarker for Psychiatric Conditions: The Road Ahead.	Journal of the American Academy of Child and Adolescent Psychiatry	Shic, Frederick	April 2016	Not Relevant
26903251	Create Study	Prospective Longitudinal Studies of Infant Siblings of Children With Autism: Lessons Learned and Future Directions.	Journal of the American Academy of Child and Adolescent Psychiatry	Szatmari, Peter; Chawarska, Katarzyna; Dawson, Geraldine; Georgiades, Stelios; Landa, Rebecca; Lord, Catherine; Messinger, Daniel S; Thurm, Audrey; Halladay, Alycia	March 2016	Not Relevant
26682668	Create Study	Multilevel Differences in Spontaneous Social Attention in Toddlers With Autism Spectrum Disorder.	Child development	Chawarska, Katarzyna; Ye, Saier; Shic, Frederick; Chen, Lisha	March 2016	Not Determined
26506589	Create Study	In Reply.	Journal of the American Academy of Child and Adolescent Psychiatry	Chawarska K, Chang J, Campbell D	November 2015	Not Relevant
26264996	Create Study	Examining the phenotypic heterogeneity of early autism spectrum disorder: subtypes and short-term outcomes.	Journal of child psychology and psychiatry, and allied disciplines	Kim, So Hyun; Macari, Suzanne; Koller, Judah; Chawarska, Katarzyna	January 1, 2016	Not Determined
25457930	Create Study	18-month predictors of later outcomes in younger siblings of children with autism spectrum disorder: a baby siblings research consortium study.	Journal of the American Academy of Child and Adolescent Psychiatry	Chawarska, Katarzyna; Shic, Frederick; Macari, Suzanne; Campbell, Daniel J; Brian, Jessica; Landa, Rebecca; Hutman, Ted; Nelson, Charles A; Ozonoff, Sally; Tager-Flusberg, Helen; Young, Gregory S; Zwaigenbaum, Lonnie; Cohen, Ira L; Charman, Tony; Messinger, Daniel S; Klin, Ami; Johnson, Scott; Bryson, Susan	December 2014	Not Determined
25398893	Create Study	Interest level in 2-year-olds with autism spectrum disorder predicts rate of verbal, nonverbal, and adaptive skill acquisition.	Autism : the international journal of research and practice	Klintwall L, Macari S, Eikeseth S, Chawarska K	November 2015	Not Determined
25245350	Create Study	Early generalized overgrowth in autism spectrum disorder: prevalence rates, gender effects, and clinical outcomes.	Journal of the American Academy of Child and Adolescent Psychiatry	Campbell DJ, Chang J, Chawarska K	October 2014	Not Determined
23954107	Create Study	Speech disturbs face scanning in 6-month-old infants who develop autism spectrum disorder.	Biological psychiatry	Shic, Frederick; Macari, Suzanne; Chawarska, Katarzyna	February 1, 2014	Not Determined
23877749	Create Study	Gaze response to dyadic bids at 2 years related to outcomes at 3 years in autism spectrum disorders: a subtyping analysis.	Journal of autism and developmental disorders	Campbell, Daniel J; Shic, Frederick; Macari, Suzanne; Chawarska, Katarzyna	February 2014	Not Determined
23468071	Create Study	Systematic review and meta-analysis of pharmacological treatment of the symptoms of attention-deficit/hyperactivity disorder in children with pervasive developmental disorders.	Journal of autism and developmental disorders	Reichow B, Volkmar FR, Bloch MH	October 2013	Not Determined
23160490	Create Study	Somatic copy number mosaicism in human skin revealed by induced pluripotent stem cells.	Nature	Abyzov A, Mariani J, Palejev D, Zhang Y, Haney MS, Tomasini L, Ferrandino AF, Rosenberg Belmaker LA, Szekely A, Wilson M, Kocabas A, Calixto NE, Grigorenko EL, Huttner A, Chawarska K, Weissman S, Urban AE, Gerstein M, Vaccarino FM	December 20, 2012	Not Determined
23062302	Create Study	Lexical decision as an endophenotype for reading comprehension: an exploration of an association.	Development and psychopathology	Naples A, Katz L, Grigorenko EL	November 2012	Not Determined
22984058	Create Study	Neuroscience. The emerging biology of autism spectrum disorders.	Science (New York, N.Y.)	State MW, Šestan N	September 14, 2012	Not Determined
22612543	Create Study	Reading and a diffusion model analysis of reaction time.	Developmental neuropsychology	Naples A, Katz L, Grigorenko EL	2012	Not Determined
22449643	Create Study	Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder.	Journal of the American Academy of Child and Adolescent Psychiatry	McPartland JC, Reichow B, Volkmar FR	April 2012	Not Determined
22428993	Create Study	Context modulates attention to social scenes in toddlers with autism.	Journal of child psychology and psychiatry, and allied disciplines	Chawarska, Katarzyna; Macari, Suzanne; Shic, Frederick	August 2012	Not Determined
22267520	Create Study	Autistic traits are associated with diminished neural response to affective touch.	Social cognitive and affective neuroscience	Voos AC, Pelphrey KA, Kaiser MD	April 2013	Not Determined
22160686	Create Study	Inhibition of eye blinking reveals subjective perceptions of stimulus salience.	Proceedings of the National Academy of Sciences of the United States of America	Shultz S, Klin A, Jones W	December 27, 2011	Not Determined
22123582	Create Study	Differential patterns of whole-genome DNA methylation in institutionalized children and children raised by their biological parents.	Development and psychopathology	Naumova OY, Lee M, Koposov R, Szyf M, Dozier M, Grigorenko EL	February 2012	Not Determined
22057879	Create Study	Practitioner's guide to assessment of autism spectrum disorders in infants and toddlers.	Journal of autism and developmental disorders	Steiner AM, Goldsmith TR, Snow AV, Chawarska K	June 2012	Not Relevant
21969460	Create Study	Early generalized overgrowth in boys with autism.	Archives of general psychiatry	Chawarska K, Campbell D, Chen L, Shic F, Klin A, Chang J	October 2011	Not Determined
21573835	Create Study	Adaptive behavior in toddlers under two with autism spectrum disorders.	Journal of autism and developmental disorders	Paul R, Loomis R, Chawarska K	February 2014	Not Determined
21567256	Create Study	Early-emerging social adaptive skills in toddlers with autism spectrum disorders: an item analysis.	Journal of autism and developmental disorders	Ventola, Pamela; Saulnier, Celine A; Steinberg, Elizabeth; Chawarska, Katarzyna; Klin, Ami	February 2014	Not Determined
21373955	Create Study	Brief report: face-specific recognition deficits in young children with autism spectrum disorders.	Journal of autism and developmental disorders	Bradshaw J, Shic F, Chawarska K	October 2011	Not Determined
21308998	Create Study	Phonology and vocal behavior in toddlers with autism spectrum disorders.	Autism research : official journal of the International Society for Autism Research	Schoen E, Paul R, Chawarska K	June 2011	Not Determined
21133549	Create Study	Cross-informant symptoms from CBCL, TRF, and YSR: trait and method variance in a normative sample of Russian youths.	Psychological assessment	Grigorenko EL, Geiser C, Slobodskaya HR, Francis DJ	December 2010	Not Determined
21129365	Create Study	Limited activity monitoring in toddlers with autism spectrum disorder.	Brain research	Shic F, Bradshaw J, Klin A, Scassellati B, Chawarska K	March 22, 2011	Not Determined
21106717	Create Study	Characterizing and predicting outcomes of communication delays in infants and toddlers: implications for clinical practice.	Language, speech, and hearing services in schools	Paul R, Roth FP	July 2011	Not Determined
21039489	Create Study	Out of the mouths of babes: vocal production in infant siblings of children with ASD.	Journal of child psychology and psychiatry, and allied disciplines	Paul, Rhea; Fuerst, Yael; Ramsay, Gordon; Chawarska, Kasia; Klin, Ami	May 2011	Not Determined
20852731	Create Study	Differentiating ASD from DLD in Toddlers.	Perspectives on language learning and education	Paul, Rhea; Chawarska, Katyrzyna; Volkmar, Fred	October 1, 2008	Not Determined
20124117	Create Study	Limited attentional bias for faces in toddlers with autism spectrum disorders.	Archives of general psychiatry	Chawarska K, Volkmar F, Klin A	February 2010	Not Determined
20101452	Create Study	Teaching children with autism to read for meaning: challenges and possibilities.	Journal of autism and developmental disorders	Randi J, Newman T, Grigorenko EL	July 2010	Not Determined
19953194	Create Study	Pathogenesis of autism: a patchwork of genetic causes.	Future neurology	Grigorenko, Elena L	2009	Not Determined
19594835	Create Study	A prospective study of toddlers with ASD: short-term diagnostic and cognitive outcomes.	Journal of child psychology and psychiatry, and allied disciplines	Chawarska K, Klin A, Paul R, Macari S, Volkmar F	October 2009	Not Determined
19590943	Create Study	Looking but not seeing: atypical visual scanning and recognition of faces in 2 and 4-year-old children with autism spectrum disorder.	Journal of autism and developmental disorders	Chawarska K, Shic F	December 2009	Not Determined
19360656	Create Study	Language outcomes of toddlers with autism spectrum disorders: a two year follow-up.	Autism research : official journal of the International Society for Autism Research	Paul R, Chawarska K, Cicchetti D, Volkmar F	April 2008	Not Determined
18778978	Create Study	Three things to remember if you are a functional magnetic resonance imaging researcher of face processing in autism spectrum disorders.	Biological psychiatry	Klin A	October 1, 2008	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

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
Examining the validity of the use of ratio IQs in psychological assessments	IQ tests are amongst the most used psychological assessments, both in research and clinical settings. For participants who cannot complete IQ tests normed for their age, ratio IQ scores (RIQ) are routinely computed and used as a proxy of IQ, especially in large research databases to avoid missing data points. However, because it has never been scientifically validated, this practice is questionable. In the era of big data, it is important to examine the validity of this widely used practice. In this paper, we use the case of autism to examine the differences between standard full-scale IQ (FSIQ) and RIQ. Data was extracted from four databases in which ages, FSIQ scores and subtests raw scores were available for autistic participants between 2 and 17 years old. The IQ tests included were the MSEL (N=12033), DAS-II early years (N=1270), DAS-II school age (N=2848), WISC-IV (N=471) and WISC-V (N=129). RIQs were computed for each participant as well as the discrepancy (DSC) between RIQ and FSIQ. We performed two linear regressions to respectively assess the effect of FSIQ and of age on the DSC for each IQ test, followed by additional analyses comparing age subgroups as well as FSIQ subgroups on DSC. Participants at the extremes of the FSIQ distribution tended to have a greater DSC than participants with average FSIQ. Furthermore, age significantly predicted the DSC, with RIQ superior to FSIQ for younger participants while the opposite was found for older participants. These results question the validity of this widely used alternative scoring method, especially for individuals at the extremes of the normal distribution, with whom RIQs are most often employed.	196/17423	Secondary Analysis	Shared
Prenatal substance exposure and child health: Understanding the role of environmental factors, genetics, and brain development	This current study examined the interactions of 4 most common prenatal substance exposures (PSE), which are coffee, alcohol, tobacco and cannabis with poly-environmental and genetic factors and is the first to establish the comprehensive pathway map of the PSE in the context of both poly-environmental and genetic factors and adolescent brain structure. Using the large cohort from the ABCD study, this study not only demonstrates that PSE is widely associated with offspring health, but also elucidates the existence of possible modifiable factors for those who have already had the PSE. Associations of prenatal alcohol exposure with more physical and psychological impairment, impulsivity, and better cognitive performance, and associations of prenatal coffee exposure with more externalizing and total problems remained significant after adjustment for poly-environmental and -genetic risks while associations of prenatal marijuana/tobacco exposure diminished. While prenatal alcohol exposure was associated with a larger total cortical volume and regional volumes, prenatal tobacco exposure was associated with a smaller total cortical volume and surface area, smaller regional volumes and surface areas. Prenatal coffee exposure was associated with larger postcentral gyrus volume, smaller regional volume and surface area in the pericalcarine cortex, thinner superior frontal gyrus and rostral middle frontal gyrus, thicker right lingual gyrus and isthmus-cingulate cortex.Of the four PSE, environmental factors contributed to more health associations of prenatal tobacco exposure via moderation and mediation, while genetic factors confounded more health associations of prenatal marijuana exposure. The brain mediation analysis found that at baseline, cortical volume in the right middle temporal gyrus mediated the association of prenatal alcohol exposure with externalizing problems, whereas cortical volume in the right postcentral gyrus mediated the association of prenatal coffee exposure with externalizing problems.	2/11878	Secondary Analysis	Shared
The importance of low IQ to early diagnosis of autism	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.	194/6323	Secondary Analysis	Shared
Prognostic early snapshot stratification of autism based on adaptive functioning	A major goal of precision medicine is to predict prognosis based on individualized information at the earliest possible points in development. Using early snapshots of adaptive functioning and unsupervised data- driven discovery methods, we uncover highly stable early autism subtypes that yield information relevant to later prognosis. Data from the National Institute of Mental Health Data Archive (NDA) (n = 1,098) was used to uncover three early subtypes (<72 months) that generalize with 96% accuracy. Outcome data from NDA (n = 2,561; mean age, 13 years) also reproducibly clusters into three subtypes with 99% generalization accuracy. Early snapshot subtypes predict developmental trajectories in non-verbal cognitive, language and motor domains and are predictive of membership in different adaptive functioning outcome subtypes. Robust and prognosis- relevant subtyping of autism based on early snapshots of adaptive functioning may aid future research work via prediction of these subtypes with our reproducible stratification model.	3/3517	Secondary Analysis	Shared
Unravelling the Collective Diagnostic Power Behind the Features in the Autism Diagnostic Observation Schedule	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.	125/1832	Secondary Analysis	Shared
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.	2/1708	Secondary Analysis	Shared
Automated Autism Diagnosis using Phenotypic and Genotypic Attributes: Phase I	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.	105/1045	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.	1/771	Secondary Analysis	Shared
Combining Gaze and Demographic Feature Descriptors for Autism Classification	People with autism suffer from social challenges and communication difficulties, which may prevent them from leading a fruitful and enjoyable life. It is imperative to diagnose and start treatments for autism as early as possible and, in order to do so, accurate methods of identifying the disorder are vital. We propose a novel method for classifying autism through the use of eye gaze and demographic feature descriptors that include a subject’s age and gender. We construct feature descriptors that incorporate the subject’s age and gender, as well as features based on eye gaze data. Using eye gaze information from the National Database for Autism Research, we tested our constructed feature descriptors on three different classifiers; random regression forests, C4.5 decision tree, and PART. Our proposed method for classifying autism resulted in a top classification rate of 96.2%.	27/756	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	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.	3/445	Secondary Analysis	Shared

* 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.

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Studies are associated to the Collection automatically when the data is defined in the Study.

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