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Data Types

NDAR will contain de-identified research data useful to autism spectrum disorders (ASD) researchers. The following types of data will be available within NDAR.

Common Clinical Data - ASD researchers use a variety of measures to collect clinical data. The following measures, used by many ASD researchers including the NIH ACE grantees, are supported by NDAR:

Medical and Family History Forms
• CHARGE Family Characteristics Questionnaire
• CHARGE Medical History
• Modified CHARGE Family Medical History
• CHARGE Physical Exam
• NIMH Medical History Questionnaire

Karyotyping
• Karyotype

Assessments
• Autism Diagnostic Observation Schedule
• Autism Diagnostic Interview - R (ADI-R)
• Vineland Adaptive Behavior Scales
• Aberrant Behavior Checklist
• PDDBI
• Social Communication Questionnaire (SCQ)
• SRS Parent Report (2005)
• MCHAT (1999)
• MULLEN Scales of Early Learning - AGS Edition (1995)
• Peabody Picture Vocabulary Test (PPVT)
• Differential Ability Scales

IQ or Developmental Assessment
• Wechsler Intelligence Scale for Children - IV (WISC-IV)
• Wechsler Abbreviated Scale of Intelligence (WASI)
• Wechsler Adult Intelligence Scale (WAIS) III

Imaging - NDAR supports the receipt of raw brain images in DICOM format. NDAR also supports processed images in a variety of formats (e.g., DICOM, MINC 1.0 and 2.0, Analyze, NIfTi, AFNI, SPM).

Genomics - NDAR supports the submission of SNP and gene expression microarray data to the NDAR Data Repository including raw, processed, and results data. NDAR also stores descriptions associated with these data such as pedigree, biological samples, experiment design, experiment samples, reagents, and protocols.

Study Methods - NDAR provides Principal Investigators the opportunity to provide study methods specific to the data submitted to NDAR.

Global Unique ID (GUID) - To support cross-study comparisons of research participants, it is important to know if an individual is participating in multiple studies. However, to protect privacy NDAR cannot contain personally identifiable information such as name, address, or other contact information. To ensure the privacy of research participants while meeting the scientific goals of NDAR, NDAR has implemented a process for researchers to generate a GUID based upon personal information available only to the submitting researcher. Once generated, this GUID will be used by NDAR as a unique subject identifier. For more information on the NDAR GUID and its protections on privacy, refer to NDAR Data Submission and the subject protections made available in NDAR Policies.

Study Data - NDAR will work with ASD researchers to include study data beyond the common assessments, imaging and genomic data discussed above. Examples of such data include laboratory test results or custom research forms specific to a particular study. NDAR staff will work with ASD researchers to make these data available after research analysis has been performed.