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
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
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
78	MET Genotypes	Omics	03/18/2013
61	Ultradeep Illumina sequencing of A-to-I edited sites in synaptic genes from postmortem cerebella of individuals with ASD and neurotypical controls	Omics	06/23/2012
65	SNP genotypes Illumina 370k	Omics	07/30/2012
66	SSC samples exome sequencing	Omics	08/03/2012

Collection - Add Experiment

Add Supporting Documentation

Funding Source:
URL:

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

Use/Modify Existing Data Structure

Request New Data Structure

Targeted Enrollment:

Initial Submission Date:

Initial Share Date:

Data Structure Search:

Data Structures:

Submit

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:

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Biomarkers of Autism at 12 Months: From Brain Overgrowth to Genes #9

General
Experiments (7)
Shared Data
Publications (86)
Data Expected (11)
Associated Studies (7)

Collection Title	Collection Investigators	Collection Description
Collection Title:	Biomarkers of Autism at 12 Months: From Brain Overgrowth to Genes
Collection Investigators:	Eric Courchesne, Karen Pierce and others.
Collection Description:	Behavioral data from the UCSD Autism Center of Excellence. This first data deposit will include Mullen Scales of Early Learning Scores from infants ages 12-36 months who are part of the ACE. Infants represent those at risk for an ASD, language delay (LD) and developmental delay (DD). Normal control data will be deposited as well. NOTE: Headers from imaging data submitted to this collection contained Personally Identifiable Information (PII) and have been cleaned by NDA Staff
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	04/01/2008
NIH Research Initiative:	Autism Centers of Excellence (ACE)
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Blinded Clinical Trial:	No
Total Funded Amount:	$10,322,836.00
Subjects Shared:	534

{"values":[["Gene expression: microarray",218]]}

{"values":[]}

{"values":[["Neurological Control",1393],["Sibling Control",428],["Autism Spectrum Affected",265],["Fragile X",11],["Autism Spectrum Severely Affected",504],["Typical Control",511],["Not Defined",28],["Autism Spectrum Mildly Affected",205]]}

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
P50MH081755-01	Biomarkers of Autism at 12 months: From Brain Overgrowth to Genes	08/06/2007	06/30/2014	210	245	UNIVERSITY OF CALIFORNIA, SAN DIEGO	$10,322,836.00

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
116	Gene Expression Analysis WG-6	01/07/2014	Approved	Omics
155	Resting	07/25/2014	Approved	fMRI
156	Speech	07/25/2014	Approved	fMRI
157	Social Orienting	07/25/2014	Approved	fMRI
158	Word Language	07/25/2014	Approved	fMRI
159	Emotion	07/25/2014	Approved	fMRI
163	Gene Expression Analysis HT-12	08/08/2014	Approved	Omics

helpcenter.collection.experiments-tab

Collection - Experiments

The number of Experiments included is displayed in parentheses next to the tab name. You may download all experiments associated with the Collection via the Download button. You may view individual experiments by clicking the Experiment Name and add them to the Filter Cart via the Add to Cart button.

Collection Owners, Program Officers, and users with Submission or Administrative Privileges for the Collection may create or edit an Experiment.

Please note: The creation of an NDA Experiment does not necessarily mean that data collected, according to the defined Experiment, has been submitted or shared.

Frequently Asked Questions

Can an Experiment be associated with more than one Collection?
Yes -see the “Copy” button in the bottom left when viewing an experiment. There are two actions that can be performed via this button:
1. Copy the experiment with intent for modifications.
2. Associate the experiment to the collection. No modifications can be made to the experiment.

Glossary

Experiment Status

An Experiment must be Approved before data using the associated Experiment_ID may be uploaded.
Experiment ID

The ID number automatically generated by NDA which must be included in the appropriate file when uploading data to link the Experiment Definition to the subject record.

Contact NDA Help Desk

Shared Data:

Title	Type	Number of Subjects
Autism Diagnostic Observation Schedule (ADOS) Toddler	Clinical Assessments	118
Autism Diagnostic Observation Schedule (ADOS)- Module 1	Clinical Assessments	6
Autism Diagnostic Observation Schedule (ADOS)- Module 2	Clinical Assessments	25
Genomics Sample	Genomics	217
Genomics Subject	Genomics	217
Image	Imaging	363
Modified CHARGE Family Medical History (2007)	Clinical Assessments	9
Modified CHARGE Family Medical History (rev July 2007)	Clinical Assessments	8
Mullen Scales of Early Learning	Clinical Assessments	5
Research Subject	Clinical Assessments	225
Vineland-II - Parent and Caregiver Rating Form (2005)	Clinical Assessments	36

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
36266569	Create Study	A predictive ensemble classifier for the gene expression diagnosis of ASD at ages 1 to 4 years.	Molecular psychiatry	Bao, Bokan; Zahiri, Javad; Gazestani, Vahid H; Lopez, Linda; Xiao, Yaqiong; Kim, Raphael; Wen, Teresa H; Chiang, Austin W T; Nalabolu, Srinivasa; Pierce, Karen; Robasky, Kimberly; Wang, Tianyun; Hoekzema, Kendra; Eichler, Evan E; Lewis, Nathan E; Courchesne, Eric	February 1, 2023	Not Determined
35277549	Create Study	Large scale validation of an early-age eye-tracking biomarker of an autism spectrum disorder subtype.	Scientific reports	Wen, Teresa H; Cheng, Amanda; Andreason, Charlene; Zahiri, Javad; Xiao, Yaqiong; Xu, Ronghui; Bao, Bokan; Courchesne, Eric; Barnes, Cynthia Carter; Arias, Steven J; Pierce, Karen	March 11, 2022	Not Determined
34516910	Create Study	Atypical genomic cortical patterning in autism with poor early language outcome.	Science advances	Lombardo, Michael V; Eyler, Lisa; Pramparo, Tiziano; Gazestani, Vahid H; Hagler Jr, Donald J; Chen, Chi-Hua; Dale, Anders M; Seidlitz, Jakob; Bethlehem, Richard A I; Bertelsen, Natasha; Barnes, Cynthia Carter; Lopez, Linda; Campbell, Kathleen; Lewis, Nathan E; Pierce, Karen; Courchesne, Eric	September 3, 2021	Not Determined
34341515	Create Study	Pre-treatment clinical and gene expression patterns predict developmental change in early intervention in autism.	Molecular psychiatry	Lombardo, Michael V; Busuoli, Elena Maria; Schreibman, Laura; Stahmer, Aubyn C; Pramparo, Tiziano; Landi, Isotta; Mandelli, Veronica; Bertelsen, Natasha; Barnes, Cynthia Carter; Gazestani, Vahid; Lopez, Linda; Bacon, Elizabeth C; Courchesne, Eric; Pierce, Karen	December 1, 2021	Not Determined
31843053	Create Study	Default mode-visual network hypoconnectivity in an autism subtype with pronounced social visual engagement difficulties.	eLife	Lombardo, Michael V; Eyler, Lisa; Moore, Adrienne; Datko, Michael; Carter Barnes, Cynthia; Cha, Debra; Courchesne, Eric; Pierce, Karen	December 2019	Not Determined
31647314	Create Study	Identifying prognostic markers in autism spectrum disorder using eye tracking.	Autism : the international journal of research and practice	Bacon, Elizabeth C; Moore, Adrienne; Lee, Quimby; Carter Barnes, Cynthia; Courchesne, Eric; Pierce, Karen	April 2020	Not Determined
31551593	Create Study	A perturbed gene network containing PI3K-AKT, RAS-ERK and WNT-β-catenin pathways in leukocytes is linked to ASD genetics and symptom severity.	Nature neuroscience	Gazestani, Vahid H; Pramparo, Tiziano; Nalabolu, Srinivasa; Kellman, Benjamin P; Murray, Sarah; Lopez, Linda; Pierce, Karen; Courchesne, Eric; Lewis, Nathan E	October 2019	Not Determined
31311289	Create Study	Varied treatment response in young children with autism: A relative comparison of structured and naturalistic behavioral approaches.	Autism : the international journal of research and practice	Jobin, Allison	February 2020	Not Determined
31034004	Create Study	Evaluation of the Diagnostic Stability of the Early Autism Spectrum Disorder Phenotype in the General Population Starting at 12 Months.	JAMA pediatrics	Pierce, Karen; Gazestani, Vahid H; Bacon, Elizabeth; Barnes, Cynthia Carter; Cha, Debra; Nalabolu, Srinivasa; Lopez, Linda; Moore, Adrienne; Pence-Stophaeros, Sunny; Courchesne, Eric	June 2019	Not Determined
30482947	Create Study	Large-scale associations between the leukocyte transcriptome and BOLD responses to speech differ in autism early language outcome subtypes.	Nature neuroscience	Lombardo, Michael V; Pramparo, Tiziano; Gazestani, Vahid; Warrier, Varun; Bethlehem, Richard A I; Carter Barnes, Cynthia; Lopez, Linda; Lewis, Nathan E; Eyler, Lisa; Pierce, Karen; Courchesne, Eric	December 2018	Not Determined
29754501	Create Study	Naturalistic language sampling to characterize the language abilities of 3-year-olds with autism spectrum disorder.	Autism : the international journal of research and practice	Bacon, Elizabeth C; Osuna, Suzanna; Courchesne, Eric; Pierce, Karen	April 2019	Not Determined
29674594	Create Study	Paternally inherited cis-regulatory structural variants are associated with autism.	Science (New York, N.Y.)	Brandler, William M; Antaki, Danny; Gujral, Madhusudan; Kleiber, Morgan L; Whitney, Joe; Maile, Michelle S; Hong, Oanh; Chapman, Timothy R; Tan, Shirley; Tandon, Prateek; Pang, Timothy; Tang, Shih C; Vaux, Keith K; Yang, Yan; Harrington, Eoghan; Juul, Sissel; Turner, Daniel J; Thiruvahindrapuram, Bhooma; Kaur, Gaganjot; Wang, Zhuozhi; Kingsmore, Stephen F; Gleeson, Joseph G; Bisson, Denis; Kakaradov, Boyko; Telenti, Amalio; Venter, J Craig; Corominas, Roser; Toma, Claudio; Cormand, Bru; Rueda, Isabel; Guijarro, Silvina; Messer, Karen S; Nievergelt, Caroline M; Arranz, Maria J; Courchesne, Eric; Pierce, Karen; Muotri, Alysson R; Iakoucheva, Lilia M; Hervas, Amaia; Scherer, Stephen W; Corsello, Christina; Sebat, Jonathan	April 2018	Not Determined
29581878	Create Study	The geometric preference subtype in ASD: identifying a consistent, early-emerging phenomenon through eye tracking.	Molecular autism	Moore A, Wozniak M, Yousef A, Barnes CC, Cha D, Courchesne E, Pierce K	January 2018	Not Determined
28803559	Create Study	Rethinking the idea of late autism spectrum disorder onset.	Development and psychopathology	Bacon, Elizabeth C; Courchesne, Eric; Barnes, Cynthia Carter; Cha, Debra; Pence, Sunny; Schreibman, Laura; Stahmer, Aubyn C; Pierce, Karen	May 1, 2018	Not Determined
28202133	Create Study	Toddlers later diagnosed with autism exhibit multiple structural abnormalities in temporal corpus callosum fibers.	Cortex; a journal devoted to the study of the nervous system and behavior	Fingher, Noa; Dinstein, Ilan; Ben-Shachar, Michal; Haar, Shlomi; Dale, Anders M; Eyler, Lisa; Pierce, Karen; Courchesne, Eric	December 2017	Not Determined
26668231	Create Study	Cell cycle networks link gene expression dysregulation, mutation, and brain maldevelopment in autistic toddlers.	Molecular systems biology	Pramparo, Tiziano; Lombardo, Michael V; Campbell, Kathleen; Barnes, Cynthia Carter; Marinero, Steven; Solso, Stephanie; Young, Julia; Mayo, Maisi; Dale, Anders; Ahrens-Barbeau, Clelia; Murray, Sarah S; Lopez, Linda; Lewis, Nathan; Pierce, Karen; Courchesne, Eric	December 2015	Not Determined
26300272	Create Study	Diffusion Tensor Imaging Provides Evidence of Possible Axonal Overconnectivity in Frontal Lobes in Autism Spectrum Disorder Toddlers.	Biological psychiatry	Solso S, Xu R, Proudfoot J, Hagler DJ, Campbell K, Venkatraman V, Carter Barnes C, Ahrens-Barbeau C, Pierce K, Dale A, Eyler L, Courchesne E	July 4, 2015	Not Determined
25981170	Create Study	Eye Tracking Reveals Abnormal Visual Preference for Geometric Images as an Early Biomarker of an Autism Spectrum Disorder Subtype Associated With Increased Symptom Severity.	Biological psychiatry	Pierce, Karen; Marinero, Steven; Hazin, Roxana; McKenna, Benjamin; Barnes, Cynthia Carter; Malige, Ajith	April 2016	Not Determined
25864635	Create Study	Different functional neural substrates for good and poor language outcome in autism.	Neuron	Lombardo MV, Pierce K, Eyler LT, Carter Barnes C, Ahrens-Barbeau C, Solso S, Campbell K, Courchesne E	April 22, 2015	Not Determined
25739104	Create Study	Prediction of autism by translation and immune/inflammation coexpressed genes in toddlers from pediatric community practices.	JAMA psychiatry	Pramparo T, Pierce K, Lombardo MV, Carter Barnes C, Marinero S, Ahrens-Barbeau C, Murray SS, Lopez L, Xu R, Courchesne E	April 2015	Not Determined
24711926	Create Study	Measuring outcome in an early intervention program for toddlers with autism spectrum disorder: use of a curriculum-based assessment.	Autism research and treatment	Bacon, Elizabeth C; Dufek, Sarah; Schreibman, Laura; Stahmer, Aubyn C; Pierce, Karen; Courchesne, Eric	2014	Not Determined
24670167	Create Study	Patches of disorganization in the neocortex of children with autism.	The New England journal of medicine	Stoner, Rich; Chow, Maggie L; Boyle, Maureen P; Sunkin, Susan M; Mouton, Peter R; Roy, Subhojit; Wynshaw-Boris, Anthony; Colamarino, Sophia A; Lein, Ed S; Courchesne, Eric	March 27, 2014	Not Relevant
24055786	Create Study	Acute prenatal exposure to a moderate dose of valproic acid increases social behavior and alters gene expression in rats.	International journal of developmental neuroscience : the official journal of the International Society for Developmental Neuroscience	Cohen OS, Varlinskaya EI, Wilson CA, Glatt SJ, Mooney SM	December 2013	Not Relevant
23828104	Create Study	Higher rates of decline for women and apolipoprotein E epsilon4 carriers.	AJNR. American journal of neuroradiology	Holland D, Desikan RS, Dale AM, McEvoy LK	December 2013	Not Determined
23727317	Create Study	Intrinsic connectivity network mapping in young children during natural sleep.	NeuroImage	Manning, Janessa H; Courchesne, Eric; Fox, Peter T	December 2013	Not Relevant
23650250	Create Study	Blood-based gene-expression predictors of PTSD risk and resilience among deployed marines: a pilot study.	American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics	Glatt, Stephen J; Tylee, Daniel S; Chandler, Sharon D; Pazol, Joel; Nievergelt, Caroline M; Woelk, Christopher H; Baker, Dewleen G; Lohr, James B; Kremen, William S; Litz, Brett T; Tsuang, Ming T; Marine Resiliency Study Investigators	June 2013	Not Relevant
23637621	Create Study	All SNPs are not created equal: genome-wide association studies reveal a consistent pattern of enrichment among functionally annotated SNPs.	PLoS genetics	Schork, Andrew J; Thompson, Wesley K; Pham, Phillip; Torkamani, Ali; Roddey, J Cooper; Sullivan, Patrick F; Kelsoe, John R; O'Donovan, Michael C; Furberg, Helena; Tobacco and Genetics Consortium; Bipolar Disorder Psychiatric Genomics Consortium; Schizophrenia Psychiatric Genomics Consortium; Schork, Nicholas J; Andreassen, Ole A; Dale, Anders M	April 2013	Not Relevant
23082203	Create Study	Enrichment and stratification for predementia Alzheimer disease clinical trials.	PloS one	Holland, Dominic; McEvoy, Linda K; Desikan, Rahul S; Dale, Anders M; Alzheimer’s Disease Neuroimaging Initiative	2012	Not Relevant
23062752	Create Study	Transcriptomic analysis of postmortem brain identifies dysregulated splicing events in novel candidate genes for schizophrenia.	Schizophrenia research	Cohen OS, Mccoy SY, Middleton FA, Bialosuknia S, Zhang-James Y, Liu L, Tsuang MT, Faraone SV, Glatt SJ	December 2012	Not Relevant
22917206	Create Study	Blood-based gene expression signatures of infants and toddlers with autism.	Journal of the American Academy of Child and Adolescent Psychiatry	Glatt SJ, Tsuang MT, Winn M, Chandler SD, Collins M, Lopez L, Weinfeld M, Carter C, Schork N, Pierce K, Courchesne E	September 2012	Not Determined
22876315	Create Study	Rates of decline in Alzheimer disease decrease with age.	PloS one	Holland, Dominic; Desikan, Rahul S; Dale, Anders M; McEvoy, Linda K; Alzheimer’s Disease Neuroimaging Initiative	2012	Not Relevant
22822038	Create Study	Diencephalic-mesencephalic junction dysplasia: a novel recessive brain malformation.	Brain : a journal of neurology	Zaki MS, Saleem SN, Dobyns WB, Barkovich AJ, Bartsch H, Dale AM, Ashtari M, Akizu N, Gleeson JG, Grijalvo-Perez AM	August 2012	Not Relevant
22457638	Create Study	Age-dependent brain gene expression and copy number anomalies in autism suggest distinct pathological processes at young versus mature ages.	PLoS genetics	Chow ML, Pramparo T, Winn ME, Barnes CC, Li HR, Weiss L, Fan JB, Murray S, April C, Belinson H, Fu XD, Wynshaw-Boris A, Schork NJ, Courchesne E	2012	Not Relevant
22375143	Create Study	Preprocessing and Quality Control Strategies for Illumina DASL Assay-Based Brain Gene Expression Studies with Semi-Degraded Samples.	Frontiers in genetics	Chow, Maggie L; Winn, Mary E; Li, Hai-Ri; April, Craig; Wynshaw-Boris, Anthony; Fan, Jian-Bing; Fu, Xiang-Dong; Courchesne, Eric; Schork, Nicholas J	January 2012	Not Determined
22350062	Study (356)	A failure of left temporal cortex to specialize for language is an early emerging and fundamental property of autism.	Brain : a journal of neurology	Eyler LT, Pierce K, Courchesne E	March 2012	Relevant
22343285	Create Study	Association of common genetic variants in GPCPD1 with scaling of visual cortical surface area in humans.	Proceedings of the National Academy of Sciences of the United States of America	Bakken TE, Roddey JC, Djurovic S, Akshoomoff N, Amaral DG, Bloss CS, Casey BJ, Chang L, Ernst TM, Gruen JR, Jernigan TL, Kaufmann WE, Kenet T, Kennedy DN, Kuperman JM, Murray SS, Sowell ER, Rimol LM, Mattingsdal M, Melle I, Agartz I, Andreassen OA, Schork NJ, Dale AM	March 6, 2012	Not Relevant
22194717	Create Study	Cognitive consilience: primate non-primary neuroanatomical circuits underlying cognition.	Frontiers in neuroanatomy	Solari, Soren Van Hout; Stoner, Rich	January 1, 2011	Not Determined
22174699	Create Study	An assessment of the individual and collective effects of variants on height using twins and a developmentally informative study design.	PLoS genetics	Vrieze, Scott I; McGue, Matt; Miller, Michael B; Legrand, Lisa N; Schork, Nicholas J; Iacono, William G	December 2011	Not Relevant
22068992	Create Study	Neuron number and size in prefrontal cortex of children with autism.	JAMA	Courchesne E, Mouton PR, Calhoun ME, Semendeferi K, Ahrens-Barbeau C, Hallet MJ, Barnes CC, Pierce K	November 9, 2011	Not Relevant
22050848	Create Study	The utility of gene expression in blood cells for diagnosing neuropsychiatric disorders.	International review of neurobiology	Woelk CH, Singhania A, Pérez-Santiago J, Glatt SJ, Tsuang MT	2011	Not Relevant
21972136	Create Study	Similarities and differences in peripheral blood gene-expression signatures of individuals with schizophrenia and their first-degree biological relatives.	American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics	Glatt, Stephen J; Stone, William S; Nossova, Nadine; Liew, Choong-Chin; Seidman, Larry J; Tsuang, Ming T	December 2011	Not Relevant
21906392	Create Study	Genome-wide expression assay comparison across frozen and fixed postmortem brain tissue samples.	BMC genomics	Chow ML, Li HR, Winn ME, April C, Barnes CC, Wynshaw-Boris A, Fan JB, Fu XD, Courchesne E, Schork NJ	2011	Not Relevant
21849792	Create Study	A geographic cline of skull and brain morphology among individuals of European Ancestry.	Human heredity	Bakken TE, Dale AM, Schork NJ	2011	Not Relevant
21843359	Create Study	Gene expression profiling of human whole blood samples with the Illumina WG-DASL assay.	BMC genomics	Winn ME, Shaw M, April C, Klotzle B, Fan JB, Murray SS, Schork NJ	2011	Not Relevant
21839162	Create Study	Annotating individual human genomes.	Genomics	Torkamani A, Scott-Van Zeeland AA, Topol EJ, Schork NJ	October 2011	Not Relevant
21830259	Create Study	Unbiased comparison of sample size estimates from longitudinal structural measures in ADNI.	Human brain mapping	Holland, Dominic; McEvoy, Linda K; Dale, Anders M; Alzheimer's Disease Neuroimaging Initiative	November 2012	Not Relevant
21826086	Create Study	Background gene expression networks significantly enhance drug response prediction by transcriptional profiling.	The pharmacogenomics journal	Torkamani A, Schork NJ	October 2012	Not Relevant
21810643	Create Study	Association of genetic variants on 15q12 with cortical thickness and cognition in schizophrenia.	Archives of general psychiatry	Bakken TE, Bloss CS, Roddey JC, Joyner AH, Rimol LM, Djurovic S, Melle I, Sundet K, Agartz I, Andreassen OA, Dale AM, Schork NJ	August 2011	Not Relevant
21695041	Create Study	The n-of-1 clinical trial: the ultimate strategy for individualizing medicine?	Personalized medicine	Lillie, Elizabeth O; Patay, Bradley; Diamant, Joel; Issell, Brian; Topol, Eric J; Schork, Nicholas J	March 2011	Not Relevant
21689606	Create Study	Disrupted neural synchronization in toddlers with autism.	Neuron	Dinstein, Ilan; Pierce, Karen; Eyler, Lisa; Solso, Stephanie; Malach, Rafael; Behrmann, Marlene; Courchesne, Eric	June 23, 2011	Not Determined
21532980	Create Study	Alternatively Spliced Genes as Biomarkers for Schizophrenia, Bipolar Disorder and Psychosis: A Blood-Based Spliceome-Profiling Exploratory Study.	Current pharmacogenomics and personalized medicine	Glatt, S J; Chandler, S D; Bousman, C A; Chana, G; Lucero, G R; Tatro, E; May, T; Lohr, J B; Kremen, W S; Everall, I P; Tsuang, M T	September 2009	Not Determined
21524759	Create Study	Detecting, studying, and treating autism early: the one-year well-baby check-up approach.	The Journal of pediatrics	Pierce K, Carter C, Weinfeld M, Desmond J, Hazin R, Bjork R, Gallagher N	September 2011	Not Determined
21479135	Create Study	Efficient and cost effective population resequencing by pooling and in-solution hybridization.	PloS one	Bansal, Vikas; Tewhey, Ryan; Leproust, Emily M; Schork, Nicholas J	2011	Not Relevant
21438146	Create Study	Dysfunctional gene splicing as a potential contributor to neuropsychiatric disorders.	American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics	Glatt, Stephen J; Cohen, Ori S; Faraone, Stephen V; Tsuang, Ming T	June 2011	Not Relevant
21388857	Create Study	Nonlinear registration of longitudinal images and measurement of change in regions of interest.	Medical image analysis	Holland D, Dale AM	August 2011	Not Relevant
21301473	Create Study	The importance of phase information for human genomics.	Nature reviews. Genetics	Tewhey R, Bansal V, Torkamani A, Topol EJ, Schork NJ	March 2011	Not Relevant
21121035	Create Study	An application and empirical comparison of statistical analysis methods for associating rare variants to a complex phenotype.	Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing	Bansal V, Libiger O, Torkamani A, Schork NJ	2011	Not Relevant
21085054	Create Study	Family-based association testing of glutamate transporter genes in autism.	Psychiatric genetics	Jacob S, Brune CW, Badner JA, Ernstrom K, Courchesne E, Lord C, Leventhal BL, Cook EH, Kim SJ	August 2011	Not Determined
20976246	Create Study	A covering method for detecting genetic associations between rare variants and common phenotypes.	PLoS computational biology	Bhatia G, Bansal V, Harismendy O, Schork NJ, Topol EJ, Frazer K, Bafna V	2010	Not Relevant
20940738	Create Study	Statistical analysis strategies for association studies involving rare variants.	Nature reviews. Genetics	Bansal V, Libiger O, Torkamani A, Schork NJ	November 2010	Not Relevant
20920490	Create Study	Brain growth across the life span in autism: age-specific changes in anatomical pathology.	Brain research	Courchesne, Eric; Campbell, Kathleen; Solso, Stephanie	March 22, 2011	Not Determined
20869953	Create Study	Early functional brain development in autism and the promise of sleep fMRI.	Brain research	Pierce K	March 22, 2011	Not Relevant
20819977	Create Study	Preference for geometric patterns early in life as a risk factor for autism.	Archives of general psychiatry	Pierce K, Conant D, Hazin R, Stoner R, Desmond J	January 2011	Not Relevant
20709627	Create Study	Contemporary human genetic strategies in aging research.	Ageing research reviews	Bloss CS, Pawlikowska L, Schork NJ	April 2011	Not Relevant
20552680	Create Study	Positive symptoms of psychosis correlate with expression of ubiquitin proteasome genes in peripheral blood.	American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics	Bousman, Chad A; Chana, Gursharan; Glatt, Stephen J; Chandler, Sharon D; May, Todd; Lohr, James; Kremen, William S; Tsuang, Ming T; Everall, Ian P	October 5, 2010	Not Relevant
20473674	Create Study	The effects of globin on microarray-based gene expression analysis of mouse blood.	Mammalian genome : official journal of the International Mammalian Genome Society	Winn, Mary E; Zapala, Matthew A; Hovatta, Iiris; Risbrough, Victoria B; Lillie, Elizabeth; Schork, Nicholas J	June 2010	Not Relevant
20433907	Create Study	Human behavioral informatics in genetic studies of neuropsychiatric disease: multivariate profile-based analysis.	Brain research bulletin	Bloss CS, Schiabor KM, Schork NJ	September 30, 2010	Not Relevant
20423962	Create Study	Curve-based multivariate distance matrix regression analysis: application to genetic association analyses involving repeated measures.	Physiological genomics	Salem RM, O'Connor DT, Schork NJ	July 7, 2010	Not Relevant
20407100	Create Study	Extremes of unexplained variation as a phenotype: an efficient approach for genome-wide association studies of cardiovascular disease.	Circulation. Cardiovascular genetics	Lanktree, Matthew B; Hegele, Robert A; Schork, Nicholas J; Spence, J David	April 2010	Not Relevant
20385893	Create Study	Contrasting gray and white matter changes in preclinical Huntington disease: an MRI study.	Neurology	Stoffers D, Sheldon S, Kuperman JM, Goldstein J, Corey-Bloom J, Aron AR	April 13, 2010	Not Relevant
20335478	Create Study	Longitudinal magnetic resonance imaging study of cortical development through early childhood in autism.	The Journal of neuroscience : the official journal of the Society for Neuroscience	Schumann CM, Bloss CS, Barnes CC, Wideman GM, Carper RA, Akshoomoff N, Pierce K, Hagler D, Schork N, Lord C, Courchesne E	March 24, 2010	Not Determined
20309761	Create Study	Genotype-based risk and pharmacogenetic sampling in clinical trials.	Journal of biopharmaceutical statistics	Schork NJ, Topol EJ	March 2010	Not Relevant
20067366	Create Study	Comparison of genetic distance measures using human SNP genotype data.	Human biology	Libiger O, Nievergelt CM, Schork NJ	August 2009	Not Relevant
19996185	Create Study	Subregional neuroanatomical change as a biomarker for Alzheimer's disease.	Proceedings of the National Academy of Sciences of the United States of America	Holland D, Brewer JB, Hagler DJ, Fennema-Notestine C, Fenema-Notestine C, Dale AM	December 8, 2009	Not Relevant
19935738	Create Study	Maternal transmission of a rare GABRB3 signal peptide variant is associated with autism.	Molecular psychiatry	Delahanty, R J; Kang, J Q; Brune, C W; Kistner, E O; Courchesne, E; Cox, N J; Cook Jr, E H; Macdonald, R L; Sutcliffe, J S	January 2011	Not Relevant
19758535	Create Study	The power and promise of identifying autism early: insights from the search for clinical and biological markers.	Annals of clinical psychiatry : official journal of the American Academy of Clinical Psychiatrists	Pierce, Karen; Glatt, Stephen J; Liptak, Gregory S; McIntyre, Laura Lee	July 2009	Not Determined
19726029	Create Study	Amygdala enlargement in toddlers with autism related to severity of social and communication impairments.	Biological psychiatry	Schumann CM, Barnes CC, Lord C, Courchesne E	November 15, 2009	Not Determined
19667321	Create Study	Regional rates of neocortical atrophy from normal aging to early Alzheimer disease.	Neurology	McDonald CR, McEvoy LK, Gharapetian L, Fennema-Notestine C, Hagler DJ, Holland D, Koyama A, Brewer JB, Dale AM	August 11, 2009	Not Relevant
19582768	Create Study	Preliminary evidence of ubiquitin proteasome system dysregulation in schizophrenia and bipolar disorder: convergent pathway analysis findings from two independent samples.	American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics	Bousman, Chad A; Chana, Gursharan; Glatt, Stephen J; Chandler, Sharon D; Lucero, Ginger R; Tatro, Erick; May, Todd; Lohr, James B; Kremen, William S; Tsuang, Ming T; Everall, Ian P	March 5, 2010	Not Relevant
19574499	Create Study	Identification of rare cancer driver mutations by network reconstruction.	Genome research	Torkamani A, Schork NJ	September 2009	Not Relevant
19549629	Create Study	Prestige centrality-based functional outlier detection in gene expression analysis.	Bioinformatics (Oxford, England)	Torkamani A, Schork NJ	September 1, 2009	Not Relevant
19481926	Create Study	Common vs. rare allele hypotheses for complex diseases.	Current opinion in genetics & development	Schork, Nicholas J; Murray, Sarah S; Frazer, Kelly A; Topol, Eric J	June 2009	Not Relevant
19186126	Create Study	Computational modeling of structurally conserved cancer mutations in the RET and MET kinases: the impact on protein structure, dynamics, and stability.	Biophysical journal	Dixit A, Torkamani A, Schork NJ, Verkhivker G	February 2009	Not Relevant
18722519	Create Study	Pathway analysis of seven common diseases assessed by genome-wide association.	Genomics	Torkamani A, Topol EJ, Schork NJ	November 2008	Not Relevant
18562267	Create Study	Predicting functional regulatory polymorphisms.	Bioinformatics (Oxford, England)	Torkamani A, Schork NJ	August 15, 2008	Not Relevant
17964254	Create Study	Mapping early brain development in autism.	Neuron	Courchesne E, Pierce K, Schumann CM, Redcay E, Buckwalter JA, Kennedy DP, Morgan J	October 25, 2007	Not Relevant

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	394	01/15/2009	442	05/15/2009	442	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
Mullen Scales of Early Learning	394	01/15/2009	5	05/15/2009	5	Approved
Genomics/omics	394	01/15/2009	217	05/15/2009	217	Approved
ADOS	394	01/15/2009	142	05/15/2009	142	Approved
ADI-R	394	01/15/2009	0	05/15/2009	0	Approved
Medical History	394	01/15/2009	9	05/15/2009	9	Approved
Communication and Symbolic Behavior Scales (CSBS)	70	01/15/2009	0	05/15/2009	0	Approved
MacArthur Bates Communicative Development Inventory	394	01/15/2009	0	05/15/2009	0	Approved
Physical Exam	394	01/15/2009	0	05/15/2009	0	Approved
Vineland (Parent and Caregiver)	394	01/15/2009	36	05/15/2009	36	Approved
Imaging (Structural, fMRI, DTI, PET, microscopy)	394	01/15/2009	363	10/30/2014	363	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
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.	5/17423	Secondary Analysis	Shared
The importance of low IQ to early diagnosis of autism	Some individuals can flexibly adapt to life’s changing demands while others, in particular those with Autism Spectrum Disorder (ASD), find it challenging. The origin of early individual differences in cognitive abilities, the putative tools with which to navigate novel information in life, including in infants later diagnosed with ASD remains unexplored. Moreover, the role of intelligence quotient (IQ) vis-à-vis core features of autism remains debated. We systematically investigate the contribution of early IQ in future autism outcomes in an extremely large, population-based study of 8,000 newborns, infants, and toddlers from the US between 2 and 68 months with over 15,000 cross-sectional and longitudinal assessments, and for whom autism outcomes are ascertained or ruled out by about 2-4 years. This population is representative of subjects involved in the National Institutes of Health (NIH)-funded research, mainly on atypical development, in the US. Analyses using predetermined age bins showed that IQ scores are consistently lower in ASD relative to TD at all ages (p<0.001), and IQ significantly correlates with calibrated severity scores (total CSS, as well as non-verbal and verbal CSS) on the ADOS. Note, VIQ is no better than the full-scale IQ to predict ASD cases. These findings raise new, compelling questions about potential atypical brain circuitry affecting performance in both verbal and nonverbal abilities and that precede an ASD diagnosis. This study is the first to establish prospectively that low early IQ is a major feature of ASD in early childhood.	4/6323	Secondary Analysis	Shared
Unravelling the Collective Diagnostic Power Behind the Features in the Autism Diagnostic Observation Schedule	Background: Autism is a group of heterogeneous disorders defined by deficits in social interaction and communication. Typically, diagnosis depends on the results of a behavioural examination called the Autism Diagnostic Observation Schedule (ADOS). Unfortunately, administration of the ADOS exam is time-consuming and requires a significant amount of expert intervention, leading to delays in diagnosis and access to early intervention programs. The diagnostic power of each feature in the ADOS exam is currently unknown. Our hypothesis is that certain features could be removed from the exam without a significant reduction in diagnostic accuracy, sensitivity or specificity. Objective: Determine the smallest subset of predictive features in ADOS module-1 (an exam variant for patients with minimal verbal skills). Methodology: ADOS module-1 datasets were acquired from the Autism Genetic Resource Exchange and the National Database for Autism Research. The datasets contained 2572 samples with the following labels: autism (1763), autism spectrum (513), and non-autism (296). The datasets were used as input to 4 different cost-sensitive classifiers in Weka (functional trees, LADTree, logistic model trees, and PART). For each classifier, a 10-fold cross validation was preformed and the number of predictive features, accuracy, sensitivity, and specificity was recorded. Results & Conclusion: Each classifier resulted in a reduction of the number of ADOS features required for autism diagnosis. The LADtree classifier was able to obtain the largest reduction, utilizing only 10 of 29 ADOS module-1 features (96.8% accuracy, 96.9% sensitivity, and 95.9% specificity). Overall, these results are a step towards a more efficient behavioural exam for autism diagnosis.	312/1832	Secondary Analysis	Shared
Age-dependent white matter microstructural disintegrity in autism spectrum disorder	There has been increasing evidence of White Matter (WM) microstructural disintegrity and connectome disruption in Autism Spectrum Disorder (ASD). We evaluated the effects of age on WM microstructure by examining Diffusion Tensor Imaging (DTI) metrics and connectome Edge Density (ED) in a large dataset of ASD and control patients from different age cohorts. N = 583 subjects from four studies from the National Database of Autism Research were included, representing four different age groups: (1) A Longitudinal MRI Study of Infants at Risk of Autism [infants, median age: 7 (interquartile range 1) months, n = 155], (2) Biomarkers of Autism at 12 months [toddlers, 32 (11)m, n = 102], (3) Multimodal Developmental Neurogenetics of Females with ASD [adolescents, 13.1 (5.3) years, n = 230], (4) Atypical Late Neurodevelopment in Autism [young adults, 19.1 (10.7)y, n = 96]. For each subject, we created Fractional Anisotropy (FA), Mean- (MD), Radial- (RD), and Axial Diffusivity (AD) maps as well as ED maps. We performed voxel-wise and tract-based analyses to assess the effects of age, ASD diagnosis and sex on DTI metrics and connectome ED. We also optimized, trained, tested, and validated different combinations of machine learning classifiers and dimensionality reduction algorithms for prediction of ASD diagnoses based on tract-based DTI and ED metrics. There is an age-dependent increase in FA and a decline in MD and RD across WM tracts in all four age cohorts, as well as an ED increase in toddlers and adolescents. After correction for age and sex, we found an ASD-related decrease in FA and ED only in adolescents and young adults, but not in infants or toddlers. While DTI abnormalities were mostly limited to the corpus callosum, connectomes showed a more widespread ASD-related decrease in ED. Finally, the best performing machine-leaning classification model achieved an area under the receiver operating curve of 0.70 in an independent validation cohort. Our results suggest that ASD-related WM microstructural disintegrity becomes evident in adolescents and young adults—but not in infants and toddlers. The ASD-related decrease in ED demonstrates a more widespread involvement of the connectome than DTI metrics, with the most striking differences being localized in the corpus callosum.	428/1362	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.	311/1045	Secondary Analysis	Shared
A human craniofacial life-course: cross-sectional morphological covariations during postnatal growth, adolescence, and aging	Covariations between anatomical structures are fundamental to craniofacial ontogeny, maturation and aging and yet are rarely studied in such a cognate fashion. Here we offer a comprehensive investigation of the human craniofacial complex using freely available software and MRI datasets representing 575 individuals from 0 to 79 years old. We employ both standard craniometrics methods as well as Procrustes based analyses to capture and document cross-sectional trends. Findings suggest that anatomical structures behave primarily as modules, and manifest integrated patterns of shape change as they compete for space, particularly with relative expansions of the brain during early postnatal life and of the face during puberty. Sexual dimorphism was detected in infancy and intensified during adolescence with gender differences in the magnitude and pattern of morphological covariation as well as of aging. These findings partly support the spatial-packing hypothesis and reveal important insights into phenotypic adjustments to deep-rooted, and presumably genetically defined, trajectories of morphological size and shape change that characterise the normal human craniofacial life-course.	32/308	Secondary Analysis	Shared
Data-Driven Generation of Synthetic Behavioral Feature Vectors Modeling Children with Autism Spectrum Disorders	Behavioral data on children with Autism Spectrum Disorders (ASD) are available thanks to standardized diagnostic tools, such as the Autism Diagnostic Observation Schedule (ADOS). This data can be of great use to enhance the learning and reasoning of agents interacting with children with ASD. However, the amount of such available data is limited and may not prove useful by itself to inform the algorithms of complex agents. To address this data scarcity problem, we present a method for generating synthetic behavioral data in the form of feature vectors characterizing a wide range of children with ASD. Our method relies on a thorough analysis and partition of the feature space based on a real dataset containing the ADOS scores of 279 children. We first analyze the real dataset using dimensionality reduction techniques, then introduce data-driven descriptors that partition the feature space into regions naturally arising from the data. We end by presenting a descriptor-based sampling method to generate synthetic feature vectors that successfully preserves the correlation structure of the real dataset.	1/173	Secondary Analysis	Shared

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