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

The primary goal of this project is to conduct a pilot study for the legally mandated population-based Parkinsons disease PD registry in the state of California. This study is one of two linked research programs with the goals of establishing and using California PD registry data. The Parkinsons Institute was funded to serve as the coordinating center for the pilot project including maintaining a secure data enclave, conduct ascertainment work in Santa Clara County and explore utilization of registry data. To date, approximately 5,000 parkinsonism cases have been identified in Santa Clara County via legally mandated reporting sources, including physicians and health care facilities. With the majority of case-finding work accomplished, project effort is being directed to investigate possible associations between PD and toxicant exposure using state databases, to define disease prevalence and care patterns among registrants, and to assess the value of the registry to stakeholders.