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:

Request Submission Exemption

Not Eligible

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

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

Collection Updated

Your Collection is now in Data Analysis phase and exempt from biannual submissions. Analyzed data is still expected prior to publication or no later than the project end date.

[CMS] Error

[CMS]

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

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

Data Expected Item	Original Sharing Date	New Sharing Date

Please provide a reason for this change, which will be sent to the Program Officers listed within this collection:

Explanation must be between 20 and 200 characters in length.

Please press Save or Cancel

Components of Limited Activity Monitoring in Toddlers with ASD #1923 Collection State:Shared

General
Experiments (1)
Shared Data
Publications (13)
Data Expected (9)
Associated Studies (11)

Collection Title	Collection Investigators	Collection Description
Collection Title:	Components of Limited Activity Monitoring in Toddlers with ASD
Collection Investigators:	Frederick Shic
Collection Description:	This proposal seeks to understand why toddlers with ASD monitor the activities of others less frequently by examining the social, perceptual, and developmental factors which may influence this ability in 20-month old toddlers with ASD and 14- and 20-month old TD toddlers. In regards to typical development, this proposal aims to chart the normative developmental changes in activity monitoring and to understand the bases for these changes, thus providing a context by which to understand limited activity monitoring in ASD. In regards to ASD, this proposal seeks to quantify to what extent limited activity monitoring in ASD is due to (1) orienting less towards the locus of the shared attention of others; (2) being less sensitive to motion cues; and (3) being more easily distracted from social activities by perceptual distractors.
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	03/01/2012
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Collection State:	Shared
Blinded Clinical Trial:	No
Total Funded Amount:	$165,646.00
Subjects Shared:	269

{"values":[]}

{"values":[["Eye Tracking",143]]}

{"values":[["Autism Spectrum Affected",245],["Typical Control",4],["Autism Spectrum Severely Affected",175],["Autism Spectrum Mildly Affected",27],["Not Defined",221],["Neurological Control",31]]}

Loading Chart...

Funding Sources:

Funding Source Name	Funding Source URL
NIH - Extramural	None

Supporting Documentation:

Grant Information:

Project Number	Project Title	Start Date	End Date	Planned Enrollment	Actual Enrollment	Organization	Funds Obligated
R03MH092618-01	Components of Limited Activity Monitoring in Toddlers with ASD	02/07/2011	06/30/2013	60	12	YALE UNIVERSITY	$165,646.00

Clinical Trials:

helpcenter.collection.general-tab

Collection - General Tab

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

Collection Title
Investigators
Collection Description
Collection Phase
Funding Source
Clinical Trials

Collection Status: The visibility status of an NDA Collection. Collection Status can be Shared or Private. Collections in Shared status are visible to all users and can be searched in the NDA Query Tool. Private Collections are not visible to NDA users. The Status of an NDA Collection only affects the visibility of information about the Collection (metadata) and does not relate to the status of the record-level research data in the NDA Collection.

Collection Phase: The current status of a research project submitting data to an NDA Collection, based on the timing of the award and/or the data that have been submitted.

Pre-Enrollment: The default entry made when the NDA Collection is created.
Enrolling: Data have been submitted to the NDA Collection or the NDA Data Expected initial submission date has been reached for at least one data structure category in the NDA Collection.
Data Analysis: Subject level data collection for the research project is completed and has been submitted to the NDA Collection. The NDA Collection owner or the NDA Help Desk may set this phase when they’ve confirmed data submission is complete and submitted subject counts match at least 90% of the target enrollment numbers in the NDA Data Expected. Data submission reminders will be turned off for the NDA Collection.
Funding Completed: The NIH grant award (or awards) associated with the NDA Collection has reached its end date. NDA Collections in Funding Completed phase are assigned a subphase to indicate the status of data submission.
- The Data Expected Subphase indicates that NDA expects more data will be submitted
- The Closeout Subphase indicates the data submission is complete.
- The Sharing Not Met Subphase indicates that data submission was not completed as expected.

Blinded Clinical Trial Status:

This status is set by a Collection Owner and indicates the research project is a double blinded clinical trial. When selected, the public view of Data Expected will show the Data Expected items and the Submission Dates, but the targeted enrollment and subjects submitted counts will not be displayed.
Targeted enrollment and subjects submitted counts are visible only to NDA Administrators and to the NDA Collection or as the NDA Collection Owner.
When an NDA Collection that is flagged Blinded Clinical Trial reaches the maximum data sharing date for that Data Repository (see https://nda.nih.gov/nda/sharing-regimen.html), the embargo on Data Expected information is released.

Funding Source

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

Supporting Documentation

Users with Submission privileges, as well as Collection Owners, Program Officers, and those with Administrator privileges, may upload and attach supporting documentation. By default, supporting documentation is shared to the general public, however, the option is also available to limit this information to qualified researchers only.

Grant Information

Identifiable details are displayed about the Project of which the Collection was derived from. You may click in the Project Number to view a full report of the Project captured by the NIH.

Clinical Trials

Any data that is collected to support or further the research of clinical studies will be available here. Collection Owners and those with Administrator privileges may add new clinical trials.

Frequently Asked Questions

How does the NIMH Data Archive (NDA) determine which Permission Group data are submitted into?

During Collection creation, NDA staff determine the appropriate Permission Group based on the type of data to be submitted, the type of access that will be available to data access users, and the information provided by the Program Officer during grant award.
How do I know when a NDA Collection has been created?

When a Collection is created by NDA staff and marked as Shared, an email notification will automatically be sent to the PI(s) of the grant(s) associated with the Collection to notify them.
Is a single grant number ever associated with more than one Collection?

The NDA system does not allow for a single grant to be associated with more than one Collection; therefore, a single grant will not be listed in the Grant Information section of a Collection for more than one Collection.
Why is there sometimes more than one grant included in a Collection?

In general, each Collection is associated with only one grant; however, multiple grants may be associated if the grant has multiple competing segments for the same grant number or if multiple different grants are all working on the same project and it makes sense to hold the data in one Collection (e.g., Cooperative Agreements).

Glossary

Administrator Privilege

A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users.
Collection Owner

Generally, the Collection Owner is the contact PI listed on a grant. Only one NDA user is listed as the Collection owner. Most automated emails are primarily sent to the Collection Owner.
Collection Phase
The Collection Phase provides information on data submission as opposed to grant/project completion so while the Collection phase and grant/project phase may be closely related they are often different. Collection users with Administrative Privileges are encouraged to edit the Collection Phase. The Program Officer as listed in eRA (for NIH funded grants) may also edit this field. Changes must be saved by clicking the Save button at the bottom of the page. This field is sortable alphabetically in ascending or descending order. Collection Phase options include:
- Pre-Enrollment: A grant/project has started, but has not yet enrolled subjects.
- Enrolling: A grant/project has begun enrolling subjects. Data submission is likely ongoing at this point.
- Data Analysis: A grant/project has completed enrolling subjects and has completed all data submissions.
- Funding Completed: A grant/project has reached the project end date.
Collection State

The Collection State indicates whether the Collection is viewable and searchable. Collections can be either Private, Shared, or an Ongoing Study. A Collection that is shared does not necessarily have shared data as the Collection State and state of data are independent of each other. This field can be edited by Collection users with Administrative Privileges and the Program Officer as listed in eRA (for NIH funded grants). Changes must be saved by clicking the Save button at the bottom of the page.
Collection Title

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

Provides the grant number(s) for the grant(s) associated with the Collection. The field is a hyperlink so clicking on the Grant number will direct the user to the grant information in the NIH Research Portfolio Online Reporting Tools (RePORT) page.
Supporting Documentation

Various documents and materials to enable efficient use of the data by investigators unfamiliar with the project and may include the research protocol, questionnaires, and study manuals.
NIH Research Initiative

NDA Collections may be organized by scientific similarity into NIH Research Initiatives, to facilitate query tool user experience. NIH Research Initiatives map to one or multiple Funding Opportunity Announcements.
Permission Group

Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.
Planned Enrollment

Number of human subject participants to be enrolled in an NIH-funded clinical research study. The data is provided in competing applications and annual progress reports.
Actual Enrollment

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

A virtual container and organization structure for data and associated documentation from one grant or one large project/consortium. It contains tools for tracking data submission and allows investigators to define a wide array of other elements that provide context for the data, including all general information regarding the data and source project, experimental parameters used to collect any event-based data contained in the Collection, methods, and other supporting documentation. They also allow investigators to link underlying data to an NDA Study, defining populations and subpopulations specific to research aims.
Data Use Limitations

Data Use Limitations (DULs) describe the appropriate secondary use of a dataset and are based on the original informed consent of a research participant. NDA only accepts consent-based data use limitations defined by the NIH Office of Science Policy.
Total Subjects Shared

The total number of unique subjects for whom data have been shared and are available for users with permission to access data.

Contact NDA Help Desk

ID	Name	Created Date	Status	Type
244	EyeTracking Experiment for Collection 1923	01/20/2015	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

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

Shared Data

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

Shared Data:

Title	Type	Number of Subjects
Autism Diagnostic Interview, Revised (ADI-R)	Clinical Assessments	79
Autism Diagnostic Observation Schedule (ADOS) - Module 1 (2007)	Clinical Assessments	79
Autism Diagnostic Observation Schedule (ADOS)- Module 1	Clinical Assessments	9
CHARGE Family Characteristics Questionnaire	Clinical Assessments	134
CHARGE Physical Exam	Clinical Assessments	59
Eye Tracking Subject-Experiment	Imaging	114
Karyotype	Clinical Assessments	81
Modified CHARGE Family Medical History (2007)	Clinical Assessments	1
Mullen Scales of Early Learning	Clinical Assessments	173
NIMH Medical History Questionnaire	Clinical Assessments	136
Vineland-II - Parent and Caregiver Rating Form (2005)	Clinical Assessments	28

helpcenter.collection.shared-data-tab

Collection - Shared Data

This tab provides a quick overview of the Data Structure title, Data Type, and Number of Subjects that are currently Shared for the Collection. The information presented in this tab is automatically generated by NDA and cannot be edited. If no information is visible on this tab, this would indicate the Collection does not have shared data or the data is private.

The shared data is available to other researchers who have permission to access data in the Collection's designated Permission Group(s). Use the Download button to get all shared data from the Collection to the Filter Cart.

Frequently Asked Questions

How will I know if another researcher uses data that I shared through the NIMH Data Archive (NDA)?

To see what data your project have submitted are being used by a study, simply go the Associated Studies tab of your collection. Alternatively, you may review an NDA Study Attribution Report available on the General tab.
Can I get a supplement to share data from a completed research project?

Often it becomes more difficult to organize and format data electronically after the project has been completed and the information needed to create a GUID may not be available; however, you may still contact a program staff member at the appropriate funding institution for more information.
Can I get a supplement to share data from a research project that is still ongoing?

Unlike completed projects where researchers may not have the information needed to create a GUID and/or where the effort needed to organize and format data becomes prohibitive, ongoing projects have more of an opportunity to overcome these challenges. Please contact a program staff member at the appropriate funding institution for more information.

Glossary

Data Structure

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

A grouping of data by similar characteristics such as Clinical Assessments, Omics, or Neurosignal data.
Shared

The term 'Shared' generally means available to others; however, there are some slightly different meanings based on what is Shared. A Shared NDA Collection or NDA Study is viewable and searchable publicly regardless of the user's role or whether the user has an NDA account. A Shared Collection or NDA Study does not necessarily mean that data submitted to the Collection or used in the NDA Study have been shared as this is independently determined. Data are shared according the schedule defined in a Collection's Data Expected Tab and/or in accordance with data sharing expectations in the NDA Data Sharing Terms and Conditions. Additionally, Supporting Documentation uploaded to a Collection may be shared independent of whether data are shared, but will only be viewable and accessible if the Collection is Shared.

Contact NDA Help Desk

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

Publications

Publications relevant to NDA data are listed below. Most displayed publications have been associated with the grant within Pubmed. Use the "+ New Publication" button to add new publications. Publications relevant/not relevant to data expected are categorized. Relevant publications are then linked to the underlying data by selecting the Create Study link. Study provides the ability to define cohorts, assign subjects, define outcome measures and lists the study type, data analysis and results. Analyzed data and results are expected in this way.

PubMed ID	Study	Title	Journal	Authors	Date	Status
33076994	Create Study	Social attention to activities in children and adults with autism spectrum disorder: effects of context and age.	Molecular autism	Kaliukhovich, Dzmitry A; Manyakov, Nikolay V; Bangerter, Abigail; Ness, Seth; Skalkin, Andrew; Goodwin, Matthew S; Dawson, Geraldine; Hendren, Robert L; Leventhal, Bennett; Hudac, Caitlin M; Bradshaw, Jessica; Shic, Frederick; Pandina, Gahan	October 19, 2020	Not Determined
31471912	Create Study	The role of limited salience of speech in selective attention to faces in toddlers with autism spectrum disorders.	Journal of child psychology and psychiatry, and allied disciplines	Shic, Frederick; Wang, Quan; Macari, Suzanne L; Chawarska, Katarzyna	April 1, 2020	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 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
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
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
26504903	Create Study	On Relationships Between Fixation Identification Algorithms and Fractal Box Counting Methods.	Proceedings. Eye Tracking Research & Applications Symposium	Wang, Quan; Kim, Elizabeth; Chawarska, Katarzyna; Scassellati, Brian; Zucker, Steven; Shic, Frederick	March 2014	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 Relevant
24473445	Create Study	A novel computational biostatistics approach implies impaired dephosphorylation of growth factor receptors as associated with severity of autism.	Translational psychiatry	Wittkowski, K M; Sonakya, V; Bigio, B; Tonn, M K; Shic, F; Ascano, M; Nasca, C; Gold-Von Simson, G	2014	Not Relevant
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 Relevant
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
23313640	Create Study	Decreased spontaneous attention to social scenes in 6-month-old infants later diagnosed with autism spectrum disorders.	Biological psychiatry	Chawarska, Katarzyna; Macari, Suzanne; Shic, Frederick	August 1, 2013	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

helpcenter.collection.publications-tab

Collection - Publications

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

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

Frequently Asked Questions

How can I determine if a publication is relevant?

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

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

Glossary

Create Study

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

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

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

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

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

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

Contact NDA Help Desk

Data Expected List: Mandatory Data Structures

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

Data Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
No Mandatory Data Expected

You can use "Add New Data Expected" to add exsiting structures and create your project's list. However, this is also the method you can use to request new structures be created for your project. When adding the Data Expected item, if the structure already exists you can locate it and specify your dates and enrollment. To add a new structure and request it be defined in the Data Dictionary, select Upload Definition and attach the definition or material needed to create it, including manual, codebooks, forms, etc. If you have multiple files, please upload a zipped archive containing them all.

Expected dates should be selected based on the standard Data Sharing Regimen and are restricted to within date ranges based on the project start and end dates.

Data Expected List: Data Structures per Research Aims

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

Data Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
Mullen Scales of Early Learning	60	07/15/2012	173	11/15/2012	173	Approved
ADOS	60	07/15/2012	82	11/15/2012	82	Approved
ADI-R	60	07/15/2012	79	11/15/2012	79	Approved
Medical History	60	07/15/2012	146	11/15/2012	146	Approved
Eye Tracking	60	07/15/2012	114	11/15/2012	114	Approved
Genetic Test	60	07/15/2012	81	11/15/2012	81	Approved
DAS-II: Differential Ability Scales	60	07/15/2012	0	11/15/2012	0	Approved
Physical Exam	60	07/15/2012	59	11/15/2012	59	Approved
Vineland (Parent and Caregiver)	60	07/15/2012	28	11/15/2012	28	Approved

Structure not yet defined

No Status history for this Data Expected has been recorded yet

helpcenter.collection.data-expected-tab

Collection - Data Expected

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

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

Contributing researchers just getting started on their project will need to define this list by adding all of the items they are collecting under their grant and setting their schedule according to the NDA Data Sharing Regimen. If you fall into this category, you can begin by clicking "Add New Data Expected" and selecting which data structures you will be using, saving the page after each change, or requesting new structures by adding and naming a new item, providing any materials NDA Data Dictionary Curators can use to help define your structure. For more information see the tutorial on creating Data Expected.

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

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

Frequently Asked Questions

What is an NDA Data Structure?

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

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

Glossary

Analyzed Data

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

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

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

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

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

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

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

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

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

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

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

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

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Associated Studies

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

Study NameFilter by Study Name	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.	173/17423	Secondary Analysis	Shared
Controls for SCCRIP	To establish a well characterized cohort for pediatric patients living with sickle cell disease	1/11185	Secondary Analysis	Private
Characterizing Auditory Hyperreactivity in Autism	Objective: To answer the following research questions: 1) What is the prevalence of auditory hyper-reactivity in ASD? 2) Does auditory hyper-reactivity severity change with age? and 3) What are the most common auditory stimuli reported to be bothersome? Research Design: Primarily descriptive secondary data analysis. Methods: Type of data: Questionnaire items regarding auditory hyper-reactivity will be filtered from: Autism Diagnostic Interview-Revised, Sensory Profile (all forms), Sensory Over-Responsivity Scale, and Sensory Experiences Questionnaire in addition to demographics (i.e., age, race, ethnicity, diagnoses). Analysis Plan: Descriptive statistics, tables and figures will be used to summarize the prevalence and severity of auditory hyper-reactivity by age. Linear regression modeling will be used to evaluate changes in auditory hyper-reactivity by age. If data is available for control subjects, statistical analyses will be conducted for means comparison (ASD vs. non-ASD).	79/7001	Secondary Analysis	Private
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.	171/6323	Secondary Analysis	Shared
The effect of compensatory mechanisms during and after pregnancy on a child's development	Early childhood involves rapid processes of human growth leading to different trajectories in physical, cognitive, social, and emotional development (Graignic-Philippe et al., 2014). These processes are influenced by a wide variety of factors such as maternal health, environmental stressors, and early childhood experiences. Current literature has shown how exposure to both acute and chronic stress during pregnancy have a pathogenetic effect throughout childhood (Kim & Leventhal, 2015; Rice, et al, 2010), leading to neurotypical or atypical development. Studies have shown how these stressors are linked neurodevelopmental disorders such Autism Spectrum Disorders (Zerbo et al., 2015; Atladóttir et al., 2012) or Attention Deficit Hyperactivity Disorder (Rosenqvist et al., 2019). In recent years, there has been a shift from traditional diagnostic research models to synthesis of different scientific fields to map lifecourse development in order for rapid translation into healthcare practices (Halfon et al., 2014). Whilst there are studies showing links between stress and atypical developmental outcomes, there is still very limited literature on compensatory mechanisms found pre- and post-pregnancy, which illustrate development of protective factors (such as presence of self-regulation, high verbal intelligence, sociability, adept social communication) against atypical developmental outcomes. This study aims to identify and measure the presence of these protective factors that appear to guard against or mitigate the emergence of neurodevelopmental disorders. Therefore, nationwide and longitudinal data are needed in order to accurately create risk models in order to map developmental trajectories.	9/5717	Secondary Analysis	Private
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.	9/1832	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.	9/1045	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%.	105/756	Secondary Analysis	Shared
Gender differences in restricted and repetitive behaviors and interests in autism	Background: The female autism phenotype has been defined by differences in core autism spectrum disorder (ASD) symptomology related to reciprocal social communication and restricted and repetitive behaviors and interests (RRBI). Previous research on RRBI in ASD has found that affected boys have increased stereotyped and restricted behaviors compared to girls with ASD (Hiller, Young, & Weber, 2014; Mandy et al., 2012). Other domains of RRBI (i.e., self-injurious, compulsive, and insistence on sameness behaviors), which contribute to DSM-5 diagnosis, are less studied and have not been examined across gender. To date, no studies have examined gender differences using a comprehensive RRBI measure, which spans stereotyped, self-injurious, compulsive, insistence on sameness, and restricted behavior domains. Objectives: To investigate whether symptoms of RRBI (i.e., stereotyped, self-injurious, ritualistic, compulsive, insistence on sameness, and restricted behavior), as measured by item-level data on the Repetitive Behavior Scale-Revised (RBS-R), can classify males versus females with ASD. Methods: Participants included 615 youth with ASD (507 males; 82.4%), between 3 and 18 years of age (M=10.26, SD=4.20), who agreed to share data with the National Database for Autism Research (NDAR). A stepwise discriminant function analysis (DFA) was used to predict the degree RBS-R data could correctly classify gender in a large sample of individuals with ASD. Standardized canonical function coefficients (SCFC) from the DFA represent the contribution of each variable to the discrimination between groups, with greater SCFC indicating greater discrimination. Results: DFA results suggest that RBS-R items significantly differentiate girls versus boys with ASD, Wilks’ λ=0.89, χ2=70.79, p<0.001. Of note, gender was classified based on a set of 8 items (see table 1). Interestingly, the items that differentiated boys from girls did not solely consist of higher stereotyped and restricted behavior in boys (as indicated by negative SCFC scores). Half of the items that differentiated gender were higher in females with ASD (as indicated by positive SCFC scores) and from the self-injurious, compulsive, and insistence on sameness domains. This set of RBS-R items had greater success in correctly classifying boys with ASD (67.90%) than in correctly classifying affected girls (61.00%). Conclusions: This study extends findings of gender differences in RRBI for ASD, demonstrating that girls with ASD may demonstrate higher self-injurious, compulsive, and insistence on sameness behavior than affected boys. It is important for future research to disentangle whether these elevated rates of RRBI in girls with ASD are central to the female autism phenotype or an epiphenomenon of the high rates of co-occurring disorders (e.g., anxiety) noted in affected girls.	1/612	Secondary Analysis	Private

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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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