Registry History

    California Parkinson’s Disease Registry Act
    Thanks to strong grassroots support from both Parkinson’s disease (PD)
    advocates and researchers, the California Parkinson’s Disease Registry Act was
    created and then was signed into law by Governor Arnold Schwarzenegger in late
    2004.   The  Registry Act mandates the California Department of Public Health to
    create a confidential listing of persons with Parkinson’s disease for health
    tracking and research purposes. You can read the full text of Registry law by
    clicking here:             CPDR Act (AB2248)   

    Stakeholders' Meeting
    In order to involve the broader Parkinson’s disease community and address the
    questions of various groups affected by the legislation, a public Stakeholders'
    Meeting was held in Oakland, CA on March 28, 2006. Sixty-five interested citizens
    attended, representing the State of California, PD advocacy groups, patients,
    caregivers, physicians, pharmacists, epidemiologists, and other research
    scientists.  Participants received information about the history of the California
    Parkinson’s Disease Registry Act, learned about the benefits of a registry and
    provided their own input in small group discussion sessions.  Stakeholders also
    learned about preliminary plans for an initial Pilot Project in four California
    counties that would precede a full statewide registry.  

    The Registry Pilot Project Partnership
    Due to the complexity and cost of establishing a registry, the project is being
    launched in phases.  The first phase will be a Pilot Project, which will target four
    California counties for registration and explore the best ways to develop a high
    quality registry that can grow over time. In October, 2007, the California Department
    of Public Health formally designated two partners to implement this Pilot Project:  
    The Parkinson’s Institute, a not-for-profit clinical care and research institute located
    in Sunnyvale, and the University of California Los Angeles School of Public Health.
    (Go to Pilot Project for more details)
California Parkinson's Disease Registry