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

Abstract

Abstract : 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 developed and implemented policies and procedures, established policies and procedures in accordance with state regulations, developed and implemented ascertainment methods, developed staff training methods and tools and conducted training for staff in the northern and southern California sites, developed, pilot tested and implemented data collection tools, prepared a secure database, and carried out registration and of cases with ICD-9 codes 332.0, 332.1, 333.0, 331.82. Case ascertainment was conducted using an active ascertainment approach. Providers and large medical groups and facilities were asked to provide lists of individuals with service contacts associated with one of the ICD-9 codes above. Ascertainment activities have been completed in the four target counties in northern and southern California (Santa Clara, Kern, Tulare, Fresno). Approximately 10,000 unique PD cases have been identified to date. Systematic de-duplication procedures have been used to ensure unique entries. Registry content was validated (i.e. confirmation of diagnosis and other qualifying criteria) and the quality and completeness of registry data was assessed using census, Medicare and death certificate data. Prevalence estimates for residents of the 4 counties in 2007 were computed overall and by region. Age- and gender- specific rates were estimated. Information obtained by active ascertainment in the registry was compared to information obtained from Medicare (CMS) for the same counties for the year 2007.