Pilot Project and Funding The first phase of the California Parkinson’s Disease Registry is a Pilot Project, which will begin in 2008 and last approximately two years. The goal of the pilot project will be to develop and implement procedures for data collection on all PD cases within several targeted California counties. The following counties, home to a combined population of over two million adults, were selected based on the availability of other local health databases and a representative diversity with regard to race/ethnicity, socioeconomic status and residence: Santa Clara County Fresno County Tulare County Kern County
containing basic information about individual cases of PD residing in the target counties. The California Department of Public Health has formally designated University of California San Francisco, and the University of California Los Angeles School of Public Health as its authorized agents for implementing this work. To find cases, project staff will be contacting local physicians, pharmacists and health care facilities designated as reporting sources in the Registry Act. Based on the interest expressed by disease advocates, a means for people with PD to voluntarily register their own information will also be created. The information to be collected will include demographic information (such as name, birth date, address) about people with PD, their health care providers (such as physician specialty), as well as basic clinical information (such as date of diagnosis, medications, disease features). During all stages of data collection, storage and use, strict confidentiality procedures conforming to national and state regulations will be followed.
Patients Reporting by health professionals and facilities Once a secure registry is established, registry staff will be able to generate summary reports describing the frequency and distribution of PD within the four project counties. Individual patient information will not be released in these reports. In addition, the staff will investigate the progress of the data collection, in preparation for expanding the registry statewide in the future. This will involve exploring questions such as: Which methods or sources provide the most information, and the information of highest quality? What are the costs involved in creating and maintaining a registry? What would stakeholders (patients, health care professionals and researchers) see as best uses for the registry? Funding The Registry Act did not allocate state funding for creation of the registry. The pilot project is being supported by funding from the agencies listed below.
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California Parkinson's Disease Registry
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