With the prevalence of diagnosed autism on the rise, increased efforts are needed to support surveillance, research, and case management. Challenges to collect, analyze and share typical and unique patient information and observations are magnified by expanding provider caseloads, delays in treatment and patient office visits, and lack of sharable data. This paper outlines recommended principles and approaches for utilizing state-of-the-art information systems technology and population-based registries to facilitate collection, analysis, and reporting of autism patient data.
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August 2004