National Database for Autism Research (NDAR)

Brief Description:

The National Database for Autism Research (NDAR) is a collaborative biomedical informatics system being created by the National Institute of Health to provide a national resource to support and accelerate research in autism.

 HPCIO has taken the leading role in the development of a clinical assessment component of the NDAR. The clinical assessment component will enable researchers to design clinical study plans and will provide common measures for data-entry. With the centralized clinical assessment repository for autism research, NDAR can provide long-term subject histories that can be used to support clinical care and integrated to genomic information for biomedical research.

List of Collaborators

• Susan E. Swedo, M.D., Senior Investigator, Chief, Pediatrics & Developmental Neuropsychiatry Branch, National Institute of Mental Health
• Audrey Thurm, Ph.D., Pediatrics & Developmental Neuropsychiatry Branch, National Institute of Mental Health
• Sarah Spence, M.D., Ph.D., Pediatrics & Developmental Neuropsychiatry Branch, National Institute of Mental Health
• Louise Ritz, MBA, Program Chief, Clinical Research and Information Systems, National Institute of Mental Health

Major Accomplishments in FY 2007

A major release of NDAR 1.0 was delivered in April 2007 as a nation-wide resource for the support and acceleration of research in autism. The release demonstrated the accomplishment of the team in overcoming extremely complex requirements and resource limitations. New features developed by the Clinical Assessment team in OpenClinica to support data collection included: implementation of scoring and skip patterns on various assessments, subject management, migration of backend database from PostgreSQL to Oracle 10g, auditing, subject tracking, restricted access to personally identifiable information, generated report on assessment usage and scoring for copyright support, and over 50 assessments to be used by the NDAR researchers.

Anticipated Major Accomplishments in FY 2008

If requested to do so, HPCIO will respond to the NDAR program office and the Autism Center of Excellence (ACE) centers on any addition clinical informatics requirements to support the conduction of clinical studies.