California's Parkinson's Disease Registry Pilot Project - Coordination Center and Northern California Ascertainment

This project consists of a pilot study conducted in partnership with the California Department of Public Health CDPH and the University of California-Los Angeles School of Public Health UCLA to implement a legally mandated statewide population-based Parkinson s disease PD registry in California to serve health surveillance and research aims. As the coordinating center for the surveillance activities, the Parkinson s Institute has achieved multiple milestones, including the development of data collection tools, staff training materials, a secure database, and policies and procedures for registry operations. Case ascertainment activities by the PI and UCLA have been underway in the four target counties in northern and southern California for more than two years with approximately 10,000 PD cases identified to date. As the database grows, we are applying systematic de-duplication procedures to ensure unique entries, validating registry content i.e. confirmation of diagnosis and other qualifying criteria and evaluating the quality and completeness of registry data using census, Medicare and death certificate data. Other analyses considered include assessing differences in PD prevalence and patterns of care across different groups, exploring associations between toxicant exposure and PD patterns utilizing state hazardous substances databases, determining the value of the registry to key stakeholder groups, and evaluating the cost of registry operation.