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NDAR provides a single access to de-identified autism research data. For permission to download data, you will need an NDAR account with approved access to NDAR or a connected repository (AGRE, IAN, or the ATP). For NDAR access, you need to be a research investigator sponsored by an NIH recognized institution with federal wide assurance. See Request Access for more information.

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1 Numbers reported are subjects by age
New Trial
New Project

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

Please select an experiment type below

New Documentation

Please enter the name of the data structure to search or if your definition does not exist, please upload that definition so that it can be appropriately defined for submission.

Shared

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

General

Title, investigators, and Collection Description may be edited along with the Collection Phase. For Collection Phase, the options Pre-enrollment, Enrollment, and Completed can be chosen allowing the Collection Owner to indicate the stage of data collection.

Funding Source

The ability to associate the funding source for the project is provided. For NIH funded grants, linkage to Project Reporter information (e.g. R01MH123456) is supported. Projects funded by others, including the URL of the project, are listed. Non NIH funded projects will become available here to link that data with the appropriate funding agency.

Supporting Documentation

Any documents related to the project may be uploaded clarifying the data or acquisition methods used may be uploaded and made available here. The default is to share these documents to the general public. An option to share only to qualified Researchers is also an option.

Clinical Trials

For clinical trials, the option to link to the clinical trial in clinicaltrials.gov is optionally provided.

Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Neurobehavioral Research on Infants at Risk for SLI and Autism
Helen Tager-flusberg 
The specific aims of the research are (1) to identify markers that distinguish between infants at risk for SLI or ASD and low risk controls; (2) to identify the predictors of later SLI and ASD diagnoses (at 36 months of age) from measures collected between 6 and 12 months of age; and (3) to compare developmental trajectories of key language and related social/cognitive measures between 6 and 36 months in infants with and without clinical outcomes. These aims will be pursued in a longitudinal prospective design following infants from 6 to 36 months of age. Data will be collected on language and social perception using behavioral, eye-tracking and neurophysiological measures as well as general measures of cognitive and brain development (head circumference; EEG).
NDAR
Enrolling
Shared

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NIH - Extramural None


R01DC010290 Neurobehavioral Research on Infants at Risk for SLI and Autism 07/01/2009 06/30/2014 BOSTON UNIVERSITY MEDICAL CAMPUS

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

Experiments

To create a new Omics, eye tracking, fMRI, or EEG experiment, press the "+ New Experiment" button. Once an experiment is created, then raw files for these types of experiments should be provided, associating the experiment – through Experiment_ID – with the metadata defined in the experiments interface.

IDNameCreated DateStatusType
No records found.

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.

Aberrant Behavior Checklist (ABC) - Community Clinical Assessments 34
Adapted ADOS Module 1 Clinical Assessments 16
Adapted ADOS Module 2 Clinical Assessments 1
Autism Diagnostic Observation Schedule (ADOS) - Module 4 Clinical Assessments 2
Autism Diagnostic Observation Schedule (ADOS)- Module 3 Clinical Assessments 2
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 1 Clinical Assessments 2
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 3 Clinical Assessments 6
BU Demographics Clinical Assessments 31
BU Medical Form Clinical Assessments 30
Dean Handedness Inventory Clinical Assessments 30
Peabody Picture Vocabulary Test, Fourth Edition-Form A Clinical Assessments 31
Ravens Coloured Progressive Matrices (CPM) Clinical Assessments 35
Repetitive Behavior Scale - Revised (RBS-R) (2000) Clinical Assessments 34
Vineland-II - Parent and Caregiver Rating Form (2005) Clinical Assessments 29

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 NDAR 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 IDStudyTitleJournalAuthorsDateStatus
26109246Create StudyRelevant
25808162Create StudyRelevant
23989937Create StudyAlpha asymmetry in infants at risk for autism spectrum disorders.Journal of autism and developmental disordersGabard-Durnam L, Tierney AL, Vogel-Farley V, Tager-Flusberg H, Nelson CAFebruary 2015Relevant

This tab provides a general status on the data expected to be shared. There are two types of data expected.

  1. By Relevant publications — Those publications that reported for the collection's grant and have a status of "relevant" for sharing are listed first. The grantee is expected to share the data specific to those publications using the NDA Study feature. If a publication is erroneously marked relevant, the PI should simply change the status. When sharing a study, only the outcome measures for the subjects/time-points are shared. Other data that have not met the share date, defined below, will remain embargoed. To initiate study creation, simply login, mark your publication as relevant and click on the link listed to begin.

  2. By Data Structure — The number of subjects expected, received and shared is provided. Investigators are expected to update the data that they are collecting, the initial submission date and initial share dates. The NIMH Data Archive shares data when those dates are met.

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
26109246Create Study
25808162Create Study
23989937Create StudyAlpha asymmetry in infants at risk for autism spectrum disorders.Journal of autism and developmental disordersGabard-Durnam L, Tierney AL, Vogel-Farley V, Tager-Flusberg H, Nelson CAFebruary 2015
Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Peabody Picture Vocabulary Test, Fourth Edition info iconApproved
ADOS info iconApproved
Ravens Coloured Progressive Matrices (CPM) info iconApproved
ABC Community info iconApproved
Repetitive Behavior Scale - Revised (RBS-R) info iconApproved
Dean Laterality Handedness info iconApproved
Medical History info iconApproved
Research Subject and Pedigree info iconApproved
Demographics info iconApproved
Vineland (Parent and Caregiver) info iconApproved
EEG info iconApproved
Eye Tracking info iconApproved
Structure not yet defined

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.