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.
Recent Accomplishments
Staff required for the development of the clinical assessment component have been identified. HPCIO has been working with Akaza Research, a provider of open source clinical trail software, on extending the capability of OpenClinica required by NDAR. OpenClinica is an open source web-based software for managing clinical research data. Two releases that extended the functionalities of OpenClinica have been completed. The extended functionality provided test scoring for the Autism Diagnostic Observational Schedule (ADOS) form and skip pattern for Autism Diagnosis Interview-Revised (ADI-R) forms.
Current and Future Work
An effort to develop a clinical assessment component of NDAR has begun. The clinical assessment is being designed to support the clinical study, data collection and data management needs of autism research.
A beta release will be made toward the end of the calendar year. Two test protocols, “A Clinical and Immunological Investigation of Regression in Autism” and “An Investigation of the Efficacy of Mercury Chelation as a Treatment for Autism Spectrum Disorder,” will be used for the beta testing.
A major release of the NDAR clinical assessment will likely be made available to the grantees of the Autism Centers of Excellence (ACE) in April 2007.
Collaborators
- Susan E. Swedo, M.D., Senior Investigator, Chief, Pediatrics & Developmental Neuropsychiatry Branch, NIMH
- Audrey Thurm, Ph.D., Pediatrics & Developmental Neuropsychiatry Branch, NIMH
- Sarah Spence, M.D., Ph.D., Pediatrics & Developmental Neuropsychiatry Branch, NIMH
- Louise Ritz, MBA, Program Chief, Clinical Research and Information Systems, NIMH
