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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. Request an account here.

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This is a U.S. Government computer system, which may be accessed and used only for authorized Government business by authorized personnel. Unauthorized access or use of this computer system may subject violators to criminal, civil, and/or administrative action.

All information on this computer system may be intercepted, recorded, read, copied, and disclosed by and to authorized personnel for official purposes, including criminal investigations. Such information includes sensitive data encrypted to comply with confidentiality and privacy requirements. Access or use of this computer system by any person, whether authorized or unauthorized, constitutes consent to these terms. There is no right of privacy in this system.

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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
New Funding Source
New Publication
Fred Volkmar fred.volkmar@yale.edu Shared

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

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. Collection State of Private will not be visible to the community. NDAR Staff will change the Collection State to Shared once the agreed date of Data Expected has been reached for any measure. The Collection State of Ongoing Study indicates that the Data Collection is ongoing and will not be shared as defined by NDAR SOP #9

Funding Source

The ability to associate the funding source for the project is provided. For NIH funded grants, this information will be completed for the investigator by linking the grant using the project information (e.g. R01MH123456). Non NIH funded projects will become available here to link that data with the appropriate funding agency.

Clinical Trials

For clinical trials, the clinical trial associated with the collection data is provided.

Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Yale Autism Center of Excellence: Mechanisms of Social Engagement in the Autism Spectrum Disorders
Volkmar, Fred  (Owner: Volkmar, Fred)
The Yale ACE consists of 5 project areas and 3 core resources. Projects I, II, and III focus on the same cohort of 12- to 24-month old infants with ASD followed up longitudinally. Project IV involves structural and functional neuroimaging protocols on a group of 10-year-olds with ASD who were...

No Data Shared

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NIH None


P50MH81756-01 Mechanisms of Social Engagement in Autism Spectrum Disorders 04/01/2008 03/31/2013 YALE UNIVERSITY

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

Experiments

Omics and EEG experiments can be defined here by selecting "Add New". fMRI and Eye Tracking experiments will be offered in fiscal year 2014. Once an experiment is created, then raw files for these types of experiments should be provided, associating the experiment – through Experiment_ID – with the file (see category experimental)

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

Shared Data

Data structures that are currently shared are listed.

Autism Diagnostic Interview, Revised (ADI-R) Clinical Assessments 109
Autism Diagnostic Observation Schedule - Module 1 Clinical Assessments 143
Autism Diagnostic Observation Schedule - Module 2 Clinical Assessments 61
CHARGE Family Characteristics Questionnaire Clinical Assessments 169
CHARGE Medical History Clinical Assessments 175
CHARGE Physical Exam Clinical Assessments 90
CSBS DP Behavior Sample Clinical Assessments 195
Intervention History Full Version Clinical Assessments 131
Karyotype Clinical Assessments 98
MacArthur-Bates CDI - Words and Gestures Form Clinical Assessments 156
MacArthur-Bates CDI - Words and Sentences Form Clinical Assessments 59
Mullen Scales of Early Learning Clinical Assessments 145
NIMH Medical History Questionnaire Clinical Assessments 166
Preschool Language Scale, Fourth Edition (PLS-4) Clinical Assessments 103
Vineland-II - Parent and Caregiver Rating Form (2005) Clinical Assessments 44
Vineland-II - Survey Form (2005) Clinical Assessments 141

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

Publications

Publications relevant to NDAR data are listed below. Use the (+) to add new publications. Once saved, these publications can then be linked to the underlying data in NDAR by selecting the Create Study link providing the ability to define cohorts, assign subjects, define outcome measures and lists the study type, data analysis and results. Analyzed data and results may be shared with the Community through NDAR in this way.



P50MH81756-01 Mechanisms of Social Engagement in Autism Spectrum Disorders 04/01/2008 03/31/2013 YALE UNIVERSITY
Paul, Rhea; Bianchi, Nancy; Augustyn, Amy; Klin, Ami; Volkmar, Fred  "Research in autism spectrum disorders"  Production of Syllable Stress in Speakers with Autism Spectrum Disorders.  (E)PubDate: 01/01/2008
Klin, Ami  "Biological psychiatry"  Three things to remember if you are a functional magnetic resonance imaging researcher of face processing in autism spectrum disorders.  (E)PubDate: 10/01/2008
Grigorenko, Elena L  "Future neurology"  Pathogenesis of autism: a patchwork of genetic causes.  (E)PubDate: 09/27/2009

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

Data Expected

Below are the data expected, received and shared by NDAR. For any changes to data expected, please contact the NDAR helpdesk at ndarmail.nih.gov. Soon, you will be able to edit these data yourself.

Data Expected Targeted Enrollment Initial Submission Date Subjects Submitted Initial Share Date Subjects Shared
ABC Community 152 Jul 15, 2009 0 Nov 15, 2009 0
ADI-R 696 Jul 15, 2009 132 Nov 15, 2009 109
ADOS 948 Jul 15, 2009 233 Nov 15, 2009 204
CHARGE Family Characteristics Questionnaire 948 Jul 15, 2009 169 Nov 15, 2009 169
DAS-II: Differential Ability Scales 76 Jul 15, 2009 19 Nov 15, 2009 0
DTI - Raw 152 Jul 15, 2009 0 Nov 15, 2009 0
Dysmorphology Exam 216 Jul 15, 2009 0 Nov 15, 2009 0
Genetic Test 732 Jul 15, 2009 98 Nov 15, 2009 98
Intervention History Interview 948 Jul 15, 2009 300 Nov 15, 2009 300
Leiter International Performance Scale-Revised (Leiter-R) 152 Jul 15, 2009 0 Nov 15, 2009 0
MRI - raw 152 Jul 15, 2009 0 Nov 15, 2009 0
MacArthur Bates Communicative Development Inventory 580 Jul 15, 2009 216 Nov 15, 2009 215
Medical History 797 Jul 15, 2009 322 Nov 15, 2009 175
Mullen Scales of Early Learning 796 Jul 15, 2009 199 Nov 15, 2009 145
NDAR Subject 152 Jul 15, 2009 0 Nov 15, 2009 0
NGS Raw 216 Jul 15, 2009 0 Nov 15, 2009 0
Physical/Neurological Exam 948 Jul 15, 2009 90 Nov 15, 2009 90
Preschool Language Scale (PLS) 180 Jul 15, 2009 103 Nov 15, 2009 103
Repetitive Behavior Scale - Revised (RBS-R) 152 Jul 15, 2009 0 Nov 15, 2009 0
Sequencing (Raw) 216 Jul 15, 2009 0 Nov 15, 2009 0
Social Communication Questionnaire (SCQ) 796 Jul 15, 2009 23 Nov 15, 2009 0
Social Responsiveness Scale (SRS) 152 Jul 15, 2009 33 Nov 15, 2009 0
Vineland-II 948 Jul 15, 2009 190 Nov 15, 2009 185
Benton Facial Recognition Test (BFRT) 152 Mar 31, 2014 0 Jul 31, 2014 0
CSBS DP 732 Mar 31, 2014 195 Jul 31, 2014 195
Clinical Evaluation of Language Fundamentals (CELF) 200 Mar 31, 2014 0 Jul 31, 2014 0
DTI - Analyzed 152 Mar 31, 2014 0 Jul 31, 2014 0
Edinburgh Handedness Inventory 152 Mar 31, 2014 0 Jul 31, 2014 0
MRI - Analyzed 152 Mar 31, 2014 0 Jul 31, 2014 0
NGS Analyzed 216 Mar 31, 2014 0 Jul 31, 2014 0
PCR 152 Mar 31, 2014 0 Jul 31, 2014 0
Reynell Developmental Language Scales 152 Mar 31, 2014 0 Jul 31, 2014 0
Victoria-Yale Face Processing Battery 152 Mar 31, 2014 0 Jul 31, 2014 0
EEG 532 Jul 15, 2014 0 Nov 15, 2014 0
fMRI - Analyzed 152 Jul 15, 2014 0 Nov 15, 2014 0
fMRI - raw 152 Jul 15, 2014 0 Nov 15, 2014 0

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

Submissions

Specific submissions are listed.

Fred Volkmar

A Study allows you to define the specific subjects associated with your experimental data allowing you to share data on subjects specific to a publication or result. When created, a Study will be private and available only to person who created it. However, basic information (e.g. description, name, investigators) will be available using the link to copy the URL and share that link in your publication. A study will remain private until you choose to have it shared, ideally at the time of your publication of a result.

Note that it is now possible to share your private data at the subject level using the Data from Papers capability allowing subject/measure level data to be shared at time of publication, without sharing all data from a lab.

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