NEWYORK, NY — The Michael J. Fox Foundation for Parkinson’s Research today announced a two and a half-year grant of $200,000 to help fund the pilot portion of the California Parkinson’s Disease Patient Registry. Additional funding has been provided by The National Institutes of Environmental Health Sciences (NIEHS).
“The establishment of a patient registry may result in a standardized and complete data collection that has the potential to deepen our understanding of the causes of Parkinson’s,” said Deborah W. Brooks, president & CEO. “Such an effort could play a significant role in accelerating progress toward a cure.”
The three-year pilot project will be led by the Parkinson’s Institute in collaboration with the California Department of Health Services. The team will also include investigators from the University of California, Los Angeles, and Kaiser Permanente Northern California, as well as patient advocates. This project will develop and implement procedures for data collection on all Parkinson’s cases within two targeted California counties. The regions will be selected based on a representative diversity with regard to race and ethnicity, socioeconomic status, and residence as well as the availability of other local research databases.
“California’s rich diversity provides an ideal climate to investigate PD risk factors,” said Caroline M. Tanner, MD, PhD, director of clinical research at The Parkinson’s Institute. “For several decades, the state has mandated reporting usage of a wide range of chemicals, which are leading environmental suspects as causes for PD. Combining this chemical usage data with PD incidence and dispersion may yield highly relevant information about who is getting this disease and why.”
This pilot project is the result of recent passage of legislation to support the beginning of the Registry. Governor Arnold Schwarzenegger approved the California Parkinson’s Disease Registry Act (CPDRA) on September 29, 2004, which mandated the California State Department of Health Services Director to create a database of people with Parkinson’s disease for research purposes only. Physicians, pharmacists and other health care practitioners diagnosing or providing treatment to Parkinson’s disease patients are required to report cases of Parkinson’s disease for use in the database. The registry program will include monitoring of Parkinson’s disease associated with chemical agents encountered by the public, both in occupational locations and in the environment.
The Parkinson’s Institute will hold a stakeholders’ meeting on March 28th at 1515 Clay Street in downtown Oakland, for Parkinson's patients, clinicians, researchers, advocates, and representatives from the government. Following a series of informational presentations describing the Registry Project, participants will be asked to provide their input and support.