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, The
Parkinson’s Institute (a not-for-profit clinical and research organization in
Sunnyvale) 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, birthdate, 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
Where can I get more information?
Updated information about the registry is available on this website. Also, you may
email questions to: Contact@tCAPDregistry.org.