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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
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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

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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
Yale Autism Center of Excellence: Mechanisms of Social Engagement in the Autism Spectrum Disorders
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 extensively characterized at the age of 2 and 4 years. Project V includes cytogenetic studies of the infants evaluated in Projects I, II, and III, and the ASD children evaluated in Project IV. The Administrative Core is charged with planning, oversight, and management of the Yale ACE. The Assessment Core ensures that all project areas have access to well-characterized patients, family members and control populations, from a behavioral/phenotypic standpoint and from a medical/pediatric and genetics standpoint. The Data Management and Analysis provides data management and data analytic expertise across projects.
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NIH - Extramural None


P50MH81756 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 on this page:

Experiments

Omics, eye tracking, fMRI and EEG experiments can be defined here by selecting Add New. 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.

ID Name Creation Date Status Type
165 Caregiver stimuli Sep 19, 2014 Approved Eye Tracking

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.

Autism Diagnostic Interview, Revised (ADI-R) Clinical Assessments 132
Autism Diagnostic Observation Schedule (ADOS)- Module 1 Clinical Assessments 144
Autism Diagnostic Observation Schedule (ADOS)- Module 2 Clinical Assessments 63
Autism Diagnostic Observation Schedule (ADOS)- Module 3 Clinical Assessments 26
CHARGE Family Characteristics Questionnaire Clinical Assessments 169
CHARGE Medical History Clinical Assessments 175
CHARGE Physical Exam Clinical Assessments 90
CPEA STAART WISC 4 Clinical Assessments 15
CSBS DP Behavior Sample Clinical Assessments 195
DAS-II: Differential Ability Scales 2nd Ed. School Age Clinical Assessments 14
DAS-II:Differential Ability Scales 2nd Ed. Early Years Clinical Assessments 5
Eye Tracking Subject-Experiment Imaging 122
Intervention History Full Version Clinical Assessments 131
Karyotype Clinical Assessments 98
MacArthur-Bates CDI - Words and Gestures Form Clinical Assessments 157
MacArthur-Bates CDI - Words and Sentences Form Clinical Assessments 59
Modified CHARGE Family Medical History (2007) Clinical Assessments 143
Modified CHARGE Family Medical History (rev July 2007) Clinical Assessments 49
Mullen Scales of Early Learning Clinical Assessments 199
NIMH Medical History Questionnaire Clinical Assessments 166
Preschool Language Scale, Fourth Edition (PLS-4) Clinical Assessments 103
Social Communication Questionnaire (SCQ) - Current Form Clinical Assessments 2
Social Communication Questionnaire (SCQ) - Lifetime Clinical Assessments 21
Social Responsiveness Scale (SRS) - Adult Version Clinical Assessments 33
Vineland-II - Parent and Caregiver Rating Form (2005) Clinical Assessments 49
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 on this page:

Publications

Publications relevant to NDAR data are listed below. Most displayed publications have been associated with the grant within Pubmed. To add a publication, use the (+) 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.




P50MH81756 Mechanisms of Social Engagement in Autism Spectrum Disorders 04/01/2008 03/31/2013 YALE UNIVERSITY
Paul R, Bianchi N, Augustyn A, Klin A, Volkmar F  "Research in autism spectrum disorders"  Production of Syllable Stress in Speakers with Autism Spectrum Disorders.  (E)PubDate: 01/01/2008
Klin A  "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 EL  "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 on this page:

Data Expected

For ongoing projects, the number of subjects expected, received and shared is provided. Investigators are expected to update the data that they are collecting, the initial submission data and initial share dates. These dates – should they coincide with the terms of award - will be used for sharing to the broader research community. For assessments not currently defined, investigators are expected to upload their definitions here and the appropriate definitions will be curated and created. Once a project is completed and all data shared, this tab will no longer be displayed.

Data Expected Targeted Enrollment Initial Submission Date Subjects Submitted Initial Share Date Subjects Shared Status
ABC Community 152 Jul 15, 2009 0 Nov 15, 2009 0 Approved
ADI-R 696 Jul 15, 2009 132 Nov 15, 2009 115 Approved
ADOS 948 Jul 15, 2009 168 Nov 15, 2009 149 Approved
DAS-II: Differential Ability Scales 76 Jul 15, 2009 14 Nov 15, 2009 13 Approved
Dysmorphology Exam 216 Jul 15, 2009 0 Nov 15, 2009 0 Approved
Genetic Test 732 Jul 15, 2009 98 Nov 15, 2009 98 Approved
Imaging (Structural, fMRI, DTI, PET, microscopy) 152 Jul 15, 2009 0 Nov 15, 2009 0 Approved
Intervention History 948 Jul 15, 2009 131 Nov 15, 2009 131 Approved
Leiter International Performance Scale-Revised (Leiter-R) 152 Jul 15, 2009 0 Nov 15, 2009 0 Approved
MacArthur Bates Communicative Development Inventory 580 Jul 15, 2009 201 Nov 15, 2009 201 Approved
Medical History 797 Jul 15, 2009 175 Nov 15, 2009 175 Approved
Mullen Scales of Early Learning 796 Jul 15, 2009 199 Nov 15, 2009 152 Approved
Physical Exam 948 Jul 15, 2009 90 Nov 15, 2009 90 Approved
Preschool Language Scale (PLS) 180 Jul 15, 2009 103 Nov 15, 2009 103 Approved
Repetitive Behavior Scale - Revised (RBS-R) 152 Jul 15, 2009 0 Nov 15, 2009 0 Approved
Research Subject and Pedigree 152 Jul 15, 2009 0 Nov 15, 2009 0 Approved
Social Communication Questionnaire (SCQ) 796 Jul 15, 2009 21 Nov 15, 2009 20 Approved
Social Responsiveness Scale (SRS) 152 Jul 15, 2009 33 Nov 15, 2009 33 Approved
Vineland (Parent and Caregiver) 948 Jul 15, 2009 188 Nov 15, 2009 180 Approved
genomics/omics (microarray, sequencing, aCGH, gene regulation, GWAS, Mass Spectrometry, CHiP, gene expression, genotyping) 216 Jul 15, 2009 0 Nov 15, 2009 0 Approved
Benton Facial Recognition Test (BFRT) 152 Mar 31, 2014 0 Jul 31, 2014 0 Approved
Clinical Evaluation of Language Fundamentals (CELF) 200 Mar 31, 2014 0 Jul 31, 2014 0 Approved
Communication and Symbolic Behavior Scales (CSBS) 732 Mar 31, 2014 195 Jul 31, 2014 195 Approved
Edinburgh Handedness Inventory 152 Mar 31, 2014 0 Jul 31, 2014 0 Approved
Reynell Developmental Language Scales 152 Mar 31, 2014 0 Jul 31, 2014 0 Approved
Victoria-Yale Face Processing Battery 152 Mar 31, 2014 0 Jul 31, 2014 0 Approved
EEG 532 Jul 15, 2014 0 Nov 15, 2014 0 Approved
Eye Tracking 122 May 13, 2015 122 May 13, 2015 122 Approved
Wechsler Intelligence Scale for Children 15 May 13, 2015 15 May 13, 2015 15 Approved

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 Name Description Number of Subjects
Collection / Total
Data Use State
Convergent and Discriminant Validity and Reliability of the Pediatric Anxiety Rating Scale in Youth with Autism Spectrum Disorders The psychometric properties of the Pediatric Anxiety Rating Scale (PARS), a clinician-administered measure for assessing severity of anxiety symptoms, were examined in 72 children and adolescents diagnosed with an autism spectrum disorder (ASD). The internal consistency of the PARS was 0.59, suggesting that the items were related but not repetitive.The PARS was strongly correlated with clinician-ratings of overall anxiety severity and parent- report anxiety measures, supporting convergent validity. Results for divergent validity were mixed. Although the PARS was not associated with the sum of the Social and Communication items on the Autism Diagnostic Observation System, it was moderately correlated with parent-reported inattention, aggression and externalizing behavior. Overall, these results suggest that the psychometric properties of the PARS are adequate for assessing anxiety symptoms in youth with ASD, although additional clarification of divergent validity is needed. 132 / 2607 Primary Analysis Shared
* Data not on individual level
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