Why a Registry?

  • Parkinson’s disease is the second most common neurodegenerative disease in
    the elderly, surpassed only by Alzheimer’s disease. It is not uncommon for
    younger persons, in their 30s or 40s, to develop the disease. It is estimated that
    over 1.5 million people in the United States suffer from Parkinson’s disease, with
    70,000 newly diagnosed cases per year.

  • Little is known about very basic aspects of Parkinson’s disease.  Who gets it?  
    What are the causes?  Is the frequency of the disease higher in certain
    communities, and is it changing over time? Are people developing symptoms at
    younger ages now than in the past?

  • A registry is the most accurate way  to determine the number of people with
    Parkinson’s disease and to identify trends in Parkinson’s disease rates in the
    population.  For example, a registry can determine whether the number of
    people with Parkinson’s disease, or with young onset Parkinson’s disease, is
    increasing.

  • A registry will provide a systematic way to link  Parkinson’s disease to chemical
    toxins and other environmental risk factors, by linking with environmental health
    databases in the state.  Thus a registry could make a dramatic contribution to
    finding the causes of Parkinson’s disease.

  • Identification of factors causing Parkinson’s disease is the first step toward
    prevention.

    Why California?

  • The large population of 35-million in California means that the registry could
    enroll several thousand patients each year, and the state's diversity means it will
    span a range of socio-economic groups and ethnicities, as well as rural and
    urban areas.

  • State health officials in California have substantial experience in tracking health
    and environmental hazards.
California Parkinson's Disease Registry
CPDR Partners