The Michael J. Fox Foundation for Parkinson’s Research (MJFF) announces it is granting $380,000 in extension funding to the California Parkinson’s Disease Registry (CPDR) to be used through June 30, 2021, according to a media release.
The investment comes after Governor Gavin Newsom signed a bill to extend the registry by 1 year. The CPDR was created in 2004, and funding for 2021 was nearly discontinued due to COVID-related financial priorities in the state.
In alignment with its mission to accelerate Parkinson’s research, MJFF has allocated gap funding to support the continuation of this critical work.
The California Parkinson’s Disease Registry is responsible for conducting epidemiological assessments of the incidence and prevalence of Parkinson’s disease (PD) throughout the state. By collecting health information on the estimated 116,900 individual cases of PD in California, researchers can monitor and identify connections to environmental and chemical exposures and deepen our understanding of the disease, the release explains.
“This registry is a critical data collection effort that could transform Parkinson’s care and treatment.
“We are glad that we can fill this gap in research funding, and we will continue to work with legislators to build and support programs and policies that serve people and families with Parkinson’s.”
— Todd Sherer, PhD, MJFF CEO
An Ideal Environment to Collect Data
Across the United States, little information is available about the patterns and trends of incidence and prevalence across populations diverse in race and ethnicity, socioeconomic status and history of exposure to occupational and environmental toxins. Due to its rich demographic diversity and large population size, California provides an ideal environment to conduct this program and model by which to create data collection systems in other states.
The US Centers for Disease Control and Prevention’s National Neurological Conditions Surveillance System pieces together various national and state data sets. Not only will the data from California be integral to the success of their endeavor, it also will make the federal system far more robust, per the release.
“The Governor’s ongoing support of the registry is greatly appreciated, and our financial commitment to help keep it going signals how important the CPDR is to the research community.”
— Ted Thompson, JD, MJFF senior vice president of public policy
The Michael J. Fox Foundation has, since its founding in 2000, invested more than $147 million in Parkinson’s research in California.
MJFF also spearheads the UCLA-California PD Registry-EHR (UCE-PD) Demonstration Project, which strives to set a framework of standards, clinical decision support, patient engagement, and electronic health record tools that will improve the accuracy, validity, and completeness of the CPDR within natural clinical workflows.
[Source(s): The Michael J. Fox Foundation for Parkinson’s Research, PR Newswire]