Frequently Asked Questions

    What is the California Parkinson’s Disease Registry?

    In late 2004, Governor Arnold Schwarzenegger signed the California Parkinson’s
    Disease Registry Act into law.  This act requires the California Department of
    Public Health (CDPH) to establish a statewide confidential database listing
    people who have Parkinson’s disease. The Registry is this protected list.  The
    new PD registry will join other state databases (such as the California Cancer
    Registry) designed to track important diseases and public health hazards.

    What is the purpose of the registry?

    The Registry Act was passed to learn more about the causes and treatment of
    PD.  Little is known about how common this condition is among different groups
    of people, what the causes are, and whether the patterns of disease are changing
    over time. For example, is PD more common in certain communities?  Is the
    number of PD cases changing over time? Collecting this information in a large
    and diverse state like California will provide important clues about the causes of
    the disease, as well as help to make sure that adequate health care resources
    are available for all patients.  Learning more about the causes of PD is key to
    preventing this disease, and may open new doors toward finding a cure.

    When will the registry begin?

    Due to the expense and complexity of this project, the registry will be developed in
    several stages over time.  The first phase of the project (which is currently being
    launched) is a pilot program.  The pilot project will establish a PD Registry in four
    California counties (Santa Clara, Fresno, Kern and Tulare) chosen by the CDPH.  
    By developing the registry in stages, we will be able to ensure that the needed
    data can be collected and secured, and that the burden on participating doctors,
    pharmacists and hospitals is minimized.  This groundwork will show the best
    approaches to maintaining an active, high quality registry over time as it expands
    to include other areas of California.  

    Who will be in charge of the registry pilot project?

    The pilot project will be carried out by the CDPH, along with two partners, University
    of California San Francisco and the UCLA School of Public Health.  These partners
    were selected for the project based on their extensive experience in PD-related
    research.  

    Who is paying for the Registry Pilot Project?

    Funding for the pilot project is being provided by the Michael J. Fox Foundation
    for Parkinson’s Research, the National Institute of Environmental Health Sciences,
    and the US Army Neurotoxin Exposure Treatment Research Program.  Additional
    support is being sought from other sources.  No state funds will be used to
    support the pilot project.

    What kind of information will be collected?

    For the pilot project , registry staff will be collecting 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).  

    How will the information be collected?

    The Registry Act requires physicians, pharmacists, and other health care
    providers to report cases of PD and allow access to their records by authorized
    registry staff.  In addition, people with PD may also voluntarily self-register.  For the
    Pilot Project , trained staff will be contacting health care providers (but not
    patients) to collect available registry information.

    Will the information remain confidential?

    Yes, the information will remain confidential as required by law.  All information will
    be collected and stored using state-of-the-art procedures and technology designed
    to protect confidentiality.  These procedures have been developed and used by
    other health department registries over several decades without security problems.
      
    How can I self-register?

    People with PD who live in one of the four pilot project counties are welcome to
    voluntarily register themselves.  For more information about self-registering, click
    here: Patients

    Where can I get more information?

    Updated information about the registry is available on this website.  Also, you may
    email questions to: Contact@CAPDregistry.com.  
California Parkinson's Disease Registry