Page Title

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

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 (AB224

)

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

ilot

roject 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

egistry, 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

egistry that can grow over time. In October, 2007, the California

Department

of Public Health formally designated two partners to implement this

Pilot Project:

niversity of California San Francisco

, and the

University of California Los Angeles

School

of Public Health

(

o to

Pilot Project

for more details)

California Parkinson's Disease Registry