NIMH Data Archive - Data

Genomics

Neuroimaging

Phenotype¹

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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.

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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]

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Change-sensitive Measurement of Emotion Dysregulation in ASD #2203

General
Experiments (0)
Shared Data
Publications (35)
Data Expected (10)
Associated Studies (7)

Collection Title	Collection Investigators	Collection Description
Collection Title:	Change-sensitive Measurement of Emotion Dysregulation in ASD
Collection Investigators:	Carla Mazefsky
Collection Description:	Data collected in development of the Emotion Dysregulation Inventory battery of assessments.
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	02/27/2015
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Blinded Clinical Trial:	No
Total Funded Amount:	$2,973,862.00
Subjects Shared:	3,045

{"values":[]}

Loading Chart...

Funding Sources:

Funding Source Name	Funding Source URL
NIH - Extramural	None

Supporting Documentation:

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

Grant Information:

Project Number	Project Title	Start Date	End Date	Planned Enrollment	Actual Enrollment	Organization	Funds Obligated
R01HD079512-01	Change-sensitive Measurement of Emotion Dysregulation in ASD	09/10/2014	02/28/2025	Not Reported	Not Reported	UNIVERSITY OF PITTSBURGH AT PITTSBURGH	$2,973,862.00

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
Aberrant Behavior Checklist (ABC) - Community	Clinical Assessments	2245
Child Behavior Checklist (CBCL) 6-18	Clinical Assessments	1133
Emotion Dysregulation Inventory (EDI)	Clinical Assessments	2329
Family Life Impairment Scale	Clinical Assessments	670
Research Subject	Clinical Assessments	2037
Social Communication Questionnaire (SCQ) - Lifetime	Clinical Assessments	2935
Social Responsiveness Scale (SRS)	Clinical Assessments	1294

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
38625489	Create Study	Correlates of Impairment and Growth in Families of Young Autistic Children.	Journal of autism and developmental disorders	MacKenzie, Kristen T; Crown, Mario J; Northrup, Jessie B; Rutenberg, Elizabeth; Hartman, Amy G; Mazefsky, Carla A	April 16, 2024	Not Determined
37422108	Create Study	The Emotion Dysregulation Inventory-Young Child: Psychometric Properties and Item Response Theory Calibration in 2- to 5-Year-Olds.	Journal of the American Academy of Child and Adolescent Psychiatry	Day, Taylor N; Mazefsky, Carla A; Yu, Lan; Zeglen, Katharine N; Neece, Cameron L; Pilkonis, Paul A	January 1, 2024	Not Determined
37393370	Create Study	Feedback Related Negativity Amplitude is Greatest Following Deceptive Feedback in Autistic Adolescents.	Journal of autism and developmental disorders	Riek, Nathan T; Susam, Busra T; Hudac, Caitlin M; Conner, Caitlin M; Akcakaya, Murat; Yun, Jane; White, Susan W; Mazefsky, Carla A; Gable, Philip A	July 1, 2023	Not Determined
36007814	Create Study	Review: Defining Positive Emotion Dysregulation: Integrating Temperamental and Clinical Perspectives.	Journal of the American Academy of Child and Adolescent Psychiatry	Vogel, Alecia C; Brotman, Melissa A; Roy, Amy Krain; Perlman, Susan B	March 1, 2023	Not Determined
35751466	Create Study	Mapping the time course of overt emotion dysregulation, self-injurious behavior, and aggression in psychiatrically hospitalized autistic youth: A naturalistic study.	Autism research : official journal of the International Society for Autism Research	Northrup, Jessie B; Goodwin, Matthew S; Peura, Christine B; Chen, Qi; Taylor, Briana J; Siegel, Matthew S; Mazefsky, Carla A	October 1, 2022	Not Determined
35403207	Create Study	A PROMIS®ing New Measure for Quantifying Emotion Dysregulation in Toddlers and Preschoolers: Development of the Emotion Dysregulation Inventory-Young Child.	Journal of autism and developmental disorders	Day, Taylor N; Northrup, Jessie B; Mazefsky, Carla A	June 1, 2023	Not Determined
35151791	Create Study	Editorial: The Boundaries of Irritability and Implications for Measurement.	Journal of the American Academy of Child and Adolescent Psychiatry	Mazefsky, Carla A	May 1, 2022	Not Determined
34903083	Create Study	Stakeholder informed development of the Emotion Awareness and Skills Enhancement team-based program (EASE-Teams).	Autism : the international journal of research and practice	Beck, Kelly B; Northrup, Jessie B; Breitenfeldt, Kaitlyn E; Porton, Shannon; Day, Taylor N; MacKenzie, Kristen T; Conner, Caitlin M; Mazefsky, Carla A	April 1, 2022	Not Determined
34436940	Create Study	Evidence Base Update for Questionnaires of Emotion Regulation and Reactivity for Children and Adolescents.	Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53	Mazefsky, Carla A; Conner, Caitlin M; Breitenfeldt, Kaitlyn; Leezenbaum, Nina; Chen, Qi; Bylsma, Lauren M; Pilkonis, Paul	January 1, 2021	Not Determined
34369833	Create Study	Predictors of Severity and Change in Emotion Dysregulation among Children and Adolescents with ASD.	Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53	Northrup, Jessie B; Patterson, Mark T; Mazefsky, Carla A	January 1, 2021	Not Determined
33815651	Create Study	Emotion Dysregulation is Substantially Elevated in Autism Compared to the General Population: Impact on Psychiatric Services.	Autism research : official journal of the International Society for Autism Research	Conner, Caitlin M; Golt, Josh; Shaffer, Rebecca; Righi, Giulia; Siegel, Matthew; Mazefsky, Carla A	January 1, 2021	Not Determined
33526240	Create Study	Assessment and Treatment of Emotion Regulation Impairment in Autism Spectrum Disorder Across the Life Span: Current State of the Science and Future Directions.	The Psychiatric clinics of North America	Beck, Kelly B; Conner, Caitlin M; Breitenfeldt, Kaitlyn E; Northrup, Jessie B; White, Susan W; Mazefsky, Carla A	March 1, 2021	Not Determined
32737670	Create Study	Therapeutic Alliance Formation for Adolescents and Young Adults with Autism: Relation to Treatment Outcomes and Client Characteristics.	Journal of autism and developmental disorders	Brewe, Alexis M; Mazefsky, Carla A; White, Susan W	May 1, 2021	Not Determined
32471600	Create Study	Assessment and Treatment of Emotion Regulation Impairment in Autism Spectrum Disorder Across the Life Span: Current State of the Science and Future Directions.	Child and adolescent psychiatric clinics of North America	Beck, Kelly B; Conner, Caitlin M; Breitenfeldt, Kaitlyn E; Northrup, Jessie B; White, Susan W; Mazefsky, Carla A	July 1, 2020	Not Determined
32222097	Create Study	Gender Differences in Emotion Dysregulation in an Autism Inpatient Psychiatric Sample.	Autism research : official journal of the International Society for Autism Research	Wieckowski, Andrea Trubanova; Luallin, Stephanie; Pan, Zhaoxing; Righi, Giulia; Gabriels, Robin L; Mazefsky, Carla	August 2020	Not Determined
32169018	Create Study	Observed emotional reactivity in response to frustration tasks in psychiatrically hospitalized youth with autism spectrum disorder.	Autism : the international journal of research and practice	Northrup, Jessie B; Goodwin, Matthew; Montrenes, Joshua; Vezzoli, Jessica; Golt, Josh; Peura, Christine B; Siegel, Matthew; Mazefsky, Carla	May 2020	Not Determined
32138940	Create Study	The Internal Structure of the Aberrant Behavior Checklist Irritability Subscale: Implications for Studies of Irritability in Treatment-Seeking Youth With Autism Spectrum Disorders.	Behavior therapy	Stoddard, Joel; Zik, Jodi; Mazefsky, Carla A; DeChant, Briar; Gabriels, Robin	March 2020	Not Determined
32106690	Create Study	Neural features of sustained emotional information processing in autism spectrum disorder.	Autism : the international journal of research and practice	Mazefsky, Carla A; Collier, Amanda; Golt, Josh; Siegle, Greg J	May 1, 2020	Not Determined
32050774	Create Study	The role of emotion regulation and core autism symptoms in the experience of anxiety in autism.	Autism : the international journal of research and practice	Conner, Caitlin M; White, Susan W; Scahill, Lawrence; Mazefsky, Carla A	May 2020	Not Determined
31939083	Create Study	A Comparative Study of Suicidality and Its Association with Emotion Regulation Impairment in Large ASD and US Census-Matched Samples.	Journal of autism and developmental disorders	Conner, Caitlin M; Golt, Josh; Righi, Giulia; Shaffer, Rebecca; Siegel, Matthew; Mazefsky, Carla A	October 2020	Not Determined
31930779	Create Study	Racial Disparities in a Sample of Inpatient Youth with ASD.	Autism research : official journal of the International Society for Autism Research	Nichols, Helen M; Dababnah, Sarah; Troen, Brittany; Vezzoli, Jessica; Mahajan, Rajneesh; Mazefsky, Carla A	April 2020	Not Determined
31910035	Create Study	Psychometric Properties of the Emotion Dysregulation Inventory in a Nationally Representative Sample of Youth.	Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53	Mazefsky, Carla A; Yu, Lan; Pilkonis, Paul A	September 1, 2021	Not Determined
31225952	Create Study	Predicting aggression to others in youth with autism using a wearable biosensor.	Autism research : official journal of the International Society for Autism Research	Goodwin MS, Mazefsky CA, Ioannidis S, Erdogmus D, Siegel M	August 2019	Not Determined
30400749	Create Study	Improving emotion regulation ability in autism: The Emotional Awareness and Skills Enhancement (EASE) program.	Autism : the international journal of research and practice	Conner CM, White SW, Beck KB, Golt J, Smith IC, Mazefsky CA	July 2019	Not Determined
30155584	Create Study	Psychosocial Treatments Targeting Anxiety and Depression in Adolescents and Adults on the Autism Spectrum: Review of the Latest Research and Recommended Future Directions.	Current psychiatry reports	White, Susan W; Simmons, Grace Lee; Gotham, Katherine O; Conner, Caitlin M; Smith, Isaac C; Beck, Kelly B; Mazefsky, Carla A	August 2018	Not Determined
29624893	Create Study	The emotion dysregulation inventory: Psychometric properties and item response theory calibration in an autism spectrum disorder sample.	Autism research : official journal of the International Society for Autism Research	Mazefsky, Carla A; Yu, Lan; White, Susan W; Siegel, Matthew; Pilkonis, Paul A	June 2018	Not Determined
29368233	Create Study	Risk Factors for Self-injurious Behavior in an Inpatient Psychiatric Sample of Children with Autism Spectrum Disorder: A Naturalistic Observation Study.	Journal of autism and developmental disorders	Handen, Benjamin L; Mazefsky, Carla A; Gabriels, Robin L; Pedersen, Kahsi A; Wallace, Meredith; Siegel, Matthew; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC)	November 2018	Not Determined
29038930	Create Study	Verbal Ability and Psychiatric Symptoms in Clinically Referred Inpatient and Outpatient Youth with ASD.	Journal of autism and developmental disorders	Lerner, Matthew D; Mazefsky, Carla A; Weber, Rebecca J; Transue, Emilie; Siegel, Matthew; Gadow, Kenneth D; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC)	November 2018	Not Determined
28624965	Create Study	Talking About Death or Suicide: Prevalence and Clinical Correlates in Youth with Autism Spectrum Disorder in the Psychiatric Inpatient Setting.	Journal of autism and developmental disorders	Horowitz, Lisa M; Thurm, Audrey; Farmer, Cristan; Mazefsky, Carla; Lanzillo, Elizabeth; Bridge, Jeffrey A; Greenbaum, Rachel; Pao, Maryland; Siegel, Matthew; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC)	November 2018	Not Determined
28597186	Create Study	Problem Behaviors in Autism Spectrum Disorder: Association with Verbal Ability and Adapting/Coping Skills.	Journal of autism and developmental disorders	Williams, Diane L; Siegel, Matthew; Mazefsky, Carla A; Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC)	November 2018	Not Determined
28536960	Create Study	Predictors of Inpatient Psychiatric Hospitalization for Children and Adolescents with Autism Spectrum Disorder.	Journal of autism and developmental disorders	Righi, Giulia; Benevides, Jill; Mazefsky, Carla; Siegel, Matthew; Sheinkopf, Stephen J; Morrow, Eric M; Autism and Developmental Disabilities Inpatient Research Collaborative (ADDIRC)	November 2018	Not Determined
27699685	Create Study	Development of the Emotion Dysregulation Inventory: A PROMIS®ing Method for Creating Sensitive and Unbiased Questionnaires for Autism Spectrum Disorder.	Journal of autism and developmental disorders	Mazefsky, Carla A; Day, Taylor N; Siegel, Matthew; White, Susan W; Yu, Lan; Pilkonis, Paul A; Autism and Developmental Disabilities Inpatient Research Collaborative (ADDIRC)	November 2018	Not Determined
26598469	Create Study	Psychiatric Hospitalization of Children With Autism or Intellectual Disability: Consensus Statements on Best Practices.	Journal of the American Academy of Child and Adolescent Psychiatry	Mcguire K, Erickson C, Gabriels RL, Kaplan D, Mazefsky C, Mcgonigle J, Meservy J, Pedapati E, Pierri J, Wink L, Siegel M	December 2015	Not Relevant
26557975	Create Study	The autism inpatient collection: methods and preliminary sample description.	Molecular autism	Siegel M, Smith KA, Mazefsky C, Gabriels RL, Erickson C, Kaplan D, Morrow EM, Wink L, Santangelo SL,	January 2015	Not Determined
26391886	Create Study	Emotion Regulation and Emotional Distress in Autism Spectrum Disorder: Foundations and Considerations for Future Research.	Journal of autism and developmental disorders	Mazefsky CA	November 2015	Not Determined

helpcenter.collection.publications-tab

Collection - Publications

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

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

Frequently Asked Questions

How can I determine if a publication is relevant?

Publications are considered relevant to a collection when the data shared is directly related to the project or collection.
Where does the NDA get the publications?

PubMed, an online library containing journals, articles, and medical research. Sponsored by NiH and National Library of Medicine (NLM).

Glossary

Create Study

A link to the Create an NDA Study page that can be clicked to start creating an NDA Study with information such as the title, journal and authors automatically populated.
Not Determined Publication

Indicates that the publication has not yet been reviewed and/or marked as Relevant or Not Relevant so it has not been determined whether an NDA Study is expected.
Not Relevant Publication

A publication that is not based on data related to the aims of the grant/project associated with the Collection or not based on any data such as a review article and, therefore, an NDA Study is not expected to be created.
PubMed

PubMed provides citation information for biomedical and life sciences publications and is managed by the U.S. National Institutes of Health's National Library of Medicine.
PubMed ID

The PUBMed ID is the unique ID number for the publication as recorded in the PubMed database.
Relevant Publication

A publication that is based on data related to the aims of the grant/project associated with the Collection and, therefore, an NDA Study is expected to be created.

Contact NDA Help Desk

Data Expected List: Mandatory Data Structures

These data structures are mandatory for your NDA Collection. Please update the Targeted Enrollment number to accurately represent the number of subjects you expect to submit for the entire study.

For NIMH HIV-related research that involves human research participants: Select the dictionary or dictionaries most appropriate for your research. If your research does not require all three data dictionaries, just ignore the ones you do not need. There is no need to delete extra data dictionaries from your NDA Collection. You can adjust the Targeted Enrollment column in the Data Expected tab to “0” for those unnecessary data dictionaries. At least one of the three data dictionaries must have a non-zero value.

Data Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
Research Subject and Pedigree	1,000	07/15/2016	2,382	11/15/2016	2,037	Approved

To create your project's Data Expected list, use the "+New Data Expected" to add or request existing structures and to request new Data Structures that are not in the NDA Data Dictionary.

If the Structure you need already exists, locate it and specify your dates and enrollment when adding it to your Data Expected list. If you require changes to the Structure you need, select the indicator stating "No, it requires changes to meet research needs," and upload a file containing your requested changes.

If the structure you need is not yet defined in the Data Dictionary, you can select "Upload Definition" and attach the necessary materials to request its creation.

When selecting the expected dates for your data, make sure to follow the standard Data Sharing Regimen and choose dates within the date ranges that correspond to your project start and end dates.

Please visit the Completing Your Data Expected Tutorial for more information.

Data Expected List: Data Structures per Research Aims

These data structures are specific to your research aims and should list all data structures in which data will be collected and submitted for this NDA Collection. Please update the Targeted Enrollment number to accurately represent the number of subjects you expect to submit for the entire study.

Data Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
ABC Community	1,000	07/15/2016	2,245	11/15/2016	2,245	Approved
Social Responsiveness Scale (SRS)	1,000	07/15/2016	1,294	11/15/2016	1,294	Approved
Social Communication Questionnaire (SCQ)	1,000	07/15/2016	3,274	11/16/2016	2,935	Approved
Child Behavior Checklist (CBCL)	100	01/15/2019	1,133	01/16/2019	1,133	Approved
Emotion Dysregulation Inventory (EDI)	1,252	07/15/2016	2,329	11/15/2016	2,329	Approved
Parent Attitude and Behavior Questionnaire	1,000	01/15/2022	1,003	05/16/2022	0	Approved
Family Life Impairment Scale (FLIS)	1,000	07/15/2021	1,004	12/15/2021	670	Approved
Survey of Well Being of Young Children	1,000	07/15/2021	233	12/15/2021	0	Approved
PROMIS Early Childhood	1,000	07/15/2021	1,003	12/15/2021	0	Approved

Structure not yet defined

No Status history for this Data Expected has been recorded yet

helpcenter.collection.data-expected-tab

Collection - Data Expected

The Data Expected tab displays the list of all data that NDA expects to receive in association with the Collection as defined by the contributing researcher, as well as the dates for the expected initial upload of the data, and when it is first expected to be shared, or with the research community. Above the primary table of Data Expected, any publications determined to be relevant to the data within the Collection are also displayed - members of the contributing research group can use these to define NDA Studies, connecting those papers to underlying data in NDA.

The tab is used both as a reference for those accessing shared data, providing information on what is expected and when it will be shared, and as the primary tracking mechanism for contributing projects. It is used by both contributing primary researchers, secondary researchers, and NIH Program and Grants Management staff.

Researchers who are starting their project need to update their Data Expected list to include all the Data Structures they are collecting under their grant and set their initial submission and sharing schedule according to the NDA Data Sharing Regimen.

To add existing Data Structures from the Data Dictionary, to request new Data Structure that are not in the Dictionary, or to request changes to existing Data Structures, click "+New Data Expected".

For step-by-step instructions on how to add existing Data Structures, request changes to an existing Structure, or request a new Data Structure, please visit the Completing Your Data Expected Tutorial.

If you are a contributing researcher creating this list for the first time, or making changes to the list as your project progress, please note the following:

Although items you add to the list and changes you make are displayed, they are not committed to the system until you Save the entire page using the "Save" button at the bottom of your screen. Please Save after every change to ensure none of your work is lost.
If you attempt to add a new structure, the title you provide must be unique - if another structure exists with the same name your change will fail.
Adding a new structure to this list is the only way to request the creation of a new Data Dictionary definition.

Frequently Asked Questions

What is an NDA Data Structure?

An NDA Data Structure is comprised of multiple Data Elements to make up an electronic definition of an assessment, measure, questionnaire, etc will have a corresponding Data Structure.
What is the NDA Data Dictionary?

The NDA Data Dictionary is comprised of electronic definitions known as Data Structures.

Glossary

Analyzed Data

Data specific to the primary aims of the research being conducted (e.g. outcome measures, other dependent variables, observations, laboratory results, analyzed images, volumetric data, etc.) including processed images.
Data Item

Items listed on the Data Expected list in the Collection which may be an individual and discrete Data Structure, Data Structure Category, or Data Structure Group.
Data Structure

A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure
Data Structure Category

An NDA term describing the affiliation of a Data Structure to a Category, which may be disease/disorder or diagnosis related (Depression, ADHD, Psychosis), specific to data type (MRI, eye tracking, omics), or type of data (physical exam, IQ).
Data Structure Group

A Data Item listed on the Data Expected tab of a Collection that indicates a group of Data Structures (e.g., ADOS or SCID) for which data may be submitted instead of a specific Data Structure identified by version, module, edition, etc. For example, the ADOS Data Structure Category includes every ADOS Data Structure such as ADOS Module 1, ADOS Module 2, ADOS Module 1 - 2nd Edition, etc. The SCID Data Structure Group includes every SCID Data Structure such as SCID Mania, SCID V Mania, SCID PTSD, SCID-V Diagnosis, and more.
Evaluated Data

A new Data Structure category, Evaluated Data is analyzed data resulting from the use of computational pipelines in the Cloud and can be uploaded directly back to a miNDAR database. Evaluated Data is expected to be listed as a Data Item in the Collection's Data Expected Tab.
Imaging Data

Imaging+ is an NDA term which encompasses all imaging related data including, but not limited to, images (DTI, MRI, PET, Structural, Spectroscopy, etc.) as well as neurosignal data (EEG, fMRI, MEG, EGG, eye tracking, etc.) and Evaluated Data.
Initial Share Date

Initial Submission and Initial Share dates should be populated according to the NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data will be shared with authorized users upon publication (via an NDA Study) or 1-2 years after the grant end date specified on the first Notice of Award, as defined in the applicable Data Sharing Terms and Conditions.
Initial Submission Date

Initial Submission and Initial Share dates should be populated according to these NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data for all subjects is not expected on the Initial Submission Date and modifications may be made as necessary based on the project's conduct.
Research Subject and Pedigree

An NDA created Data Structure used to convey basic information about the subject such as demographics, pedigree (links family GUIDs), diagnosis/phenotype, and sample location that are critical to allow for easier querying of shared data.
Submission Cycle

The NDA has two Submission Cycles per year - January 15 and July 15.
Submission Exemption

An interface to notify NDA that data may not be submitted during the upcoming/current submission cycle.

Contact NDA Help Desk

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

Associated Studies

Studies that have been defined using data from a Collection are important criteria to determine the value of data shared. The number of subjects column displays the counts from this Collection that are included in a Study, out of the total number of subjects in that study. The Data Use column represents whether or not the study is a primary analysis of the data or a secondary analysis. State indicates whether the study is private or shared with the research community.

Study NameFilter by Study Name	AbstractFilter by Abstract	Collection/Study SubjectsFilter by Collection/Study Subjects	Data UsageFilter by Data Usage	StateFilter by State
Brain-based sex differences in autism spectrum disorder across the lifespan: A systematic review of structural MRI, fMRI, and DTI findings	Females with autism spectrum disorder (ASD) have been long overlooked in neuroscience research, but emerging evidence suggests they show distinct phenotypic trajectories and age-related brain differences. Sex-related biological factors (e.g., hormones, genes) may play a role in ASD etiology and have been shown to influence neurodevelopmental trajectories. Thus, a lifespan approach is warranted to understand brain-based sex differences in ASD. This systematic review on MRI-based sex differences in ASD was conducted to elucidate variations across the lifespan and inform biomarker discovery of ASD in females. We identified articles through two database searches. Fifty studies met criteria and underwent integrative review. We found that regions expressing replicable sex-by-diagnosis differences across studies overlapped with regions showing sex differences in neurotypical (NT) cohorts, in particular regions showing NT male>female volumes. Furthermore, studies investigating age-related brain differences across a broad age-span suggest distinct neurodevelopmental patterns in females with ASD. Qualitative comparison across youth and adult studies also supported this hypothesis. However, many studies collapsed across age, which may mask differences. Furthermore, accumulating evidence supports the female protective effect in ASD, although only one study examined brain circuits implicated in “protection.” When synthesized with the broader literature, brain-based sex differences in ASD may come from various sources, including genetic and endocrine processes involved in brain “masculinization” and “feminization” across early development, puberty, and other lifespan windows of hormonal transition. Furthermore, sex-related biology may interact with peripheral processes, in particular the stress axis and brain arousal system, to produce distinct neurodevelopmental patterns in males and females with ASD. Future research on neuroimaging-based sex differences in ASD would benefit from a lifespan approach in well-controlled and multivariate studies. Possible relationships between behavior, sex hormones, and brain development in ASD remain largely unexamined.	2/759	Secondary Analysis	Shared
Word Learning and Word Features	Vocabulary composition and word-learning biases are closely interrelated in typical development. Learning new words involves attending to certain properties to facilitate word learning. Such word-learning biases are influenced by perceptually and conceptually salient word features, including high imageability, concreteness, and iconicity. This study examined the association of vocabulary knowledge and word features in young children with ASD (n = 280) and typically developing (TD) toddlers (n = 1,054). Secondary analyses were conducted using data from the National Database for Autism Research and the Wordbank database. Expressive vocabulary was measured using the MacArthur-Bates Communicative Development Inventory. Although the trajectories for concreteness, iconicity, and imageability are similar between children with ASD and TD toddlers, divergences were observed. Differences in imageability are seen early but resolve to a common trajectory; differences in iconicity are small but consistent; and differences in concreteness only emerge after both groups reach a simultaneous peak, before converging again. This study reports unique information about the nonlinear growth patterns associated with each word feature for and distinctions in these growth patterns between the groups.	1/280	Primary Analysis	Shared
Examining the Shape Bias in Young Autistic Children: A Vocabulary Composition Analysis	Shape is a salient object property and one of the first that children use to categorize objects under one label. Colunga and Sims (2017) suggest that noun vocabulary composition and word learning biases are closely interrelated in typical development. The current study examined the association between noun vocabulary knowledge and perceptual word features, specifically shape and material features. Participants included 249 autistic children and 1,245 non-autistic toddlers who were matched on expressive noun vocabulary size and gender. Nouns were categorized using the Samuelson and Smith (1999) noun feature database. A simple group comparison revealed no group differences in shape bias; both groups evidenced developing noun vocabularies that favored shape+solid and nonsolid+material nouns. However, the trajectory of evidence of shape bias as a function of vocabulary size differed between the groups, with autistic children demonstrating a reduced shape-bias initially. Future work should examine how children’s learning biases shift over development and whether the shape bias promotes lexical development to the same degree across groups.	1/249	Secondary Analysis	Shared
Modeling Vocabulary Growth in Autistic and Non-Autistic Children	We assessed the goodness of fit of three models of vocabulary growth, with varying sensitivity to the structure of the environment and the learner’s internal state, to estimated vocabulary growth trajectories in autistic and non-autistic children. We first computed word-level acquisition norms that indicate the vocabulary size at which individual words tend to be learned by each group. We then evaluated how well network growth models based on natural language co-occurrence structure and word associations account for variance in the autistic and non-autistic acquisition norms. In addition to replicating key observations from prior work and observing that the growth models explained similar amounts of variance in each group, we found that autistic vocabulary growth also exhibits growth consistent with “the lure of the associates” model. Thus, both groups leverage semantic structure in the learning environment for vocabulary development, but autistic vocabulary growth is also strongly influenced by existing vocabulary knowledge.	1/247	Secondary Analysis	Shared
Semantic modeling 2023	Although it is well documented that children with ASD are slower to develop their lexicons, we still have a limited understanding of the structure of early lexical knowledge in children with ASD. The current study uses network analysis and differential item functioning anlaysis to examine the structure of semantic knowledge, which may provide insight into the learning processes that influence early word learning.	1/208	Secondary Analysis	Shared
Semantic Network Modeling in Young Autistic Children	Background: Most young autistic children have delayed vocabulary growth relative to their non-autistic peers. Additionally, previous studies have revealed that autistic children are less likely to encode associated features of novel objects, suggesting inefficient encoding or different processes for acquiring semantic information about words. Recent network analyses of vocabulary growth revealed important relationships between early vocabulary acquisition and the structure of the sematic environment. Methods: We studied the expressive vocabularies of 970 non-autistic toddlers (Mage = 20.82 months) and 194 autistic children (Mage = 54.58 months) in two studies. The groups were vocabulary-matched (words produced: MAutistic = 213.60, MNon-autistic = 213.72). In study 1, we estimated their trajectories of semantic development using network analyses. Network structure was based on child-oriented adult-generated word associations. We compared child semantic networks according to indegree, average shortest path length, and clustering coefficient (features that holistically contribute to well-connected network structure). Then, in study 2, we attempted to relate vocabulary-level effects to word-level learning biases. Results: Study 1 revealed that autistic and non-autistic children are sensitive to the structure of their semantic environment. Both groups demonstrated nonlinear vocabulary trajectories that differed from random acquisition networks. Despite similarities, group differences were observed for each network metric. Differences were most pronounced for clustering coefficient (how closely connected groups of words are), with earlier peaks for autistic children. Study 2 demonstrated that many words differ in their expected vocabulary size of acquisition. Conclusions: Group differences at the vocabulary- and word-levels indicate that, although autistic children are learning from their semantic environment, they may be processing their semantic environment differently. These deviations indicate that autistic children have distinctive learning biases that may align with core autism features.	1/194	Secondary Analysis	Shared
Cortico-Basal Ganglia Brain Structure and Links to Restricted, Repetitive Behavior in Autism Spectrum Disorder	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.	3/192	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.

Frequently Asked Questions

How do I associate a study to my collection?

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

Glossary

Associated Studies Tab

A tab in a Collection that lists the NDA Studies that have been created using data from that Collection including both Primary and Secondary Analysis NDA Studies.

Contact NDA Help Desk

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