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




    The initial goal of the pilot project will be to generate a confidential database
    containing basic information about individual cases of PD residing in the target
    counties.  The California Department of Public Health has formally designated
    The Parkinson’s Institute and Clinical Center, a not-for-profit institute located in
    Sunnyvale, 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.  

    Please click on one of the following links for more information about reporting:

    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.

  • The Michael J. Fox Foundation for Parkinson’s Research
  • The National Institute of Environmental Health Sciences
  • The Department of Defense Neurotoxin Exposure Treatment
                Research Program
California Parkinson's Disease Registry