California Earmarks $8.4M for Parkinson’s Disease Registry
California has committed $8.4 million to the California Parkinson’s Disease Registry (CPDR) and efforts to expand it to other neurodegenerative diseases over the next four years.
The Michael J. Fox Foundation for Parkinson’s Research (MJFF) commended Gov. Gavin Newsom for signing the state’s fiscal year 2021–2022 budget, which includes that financial support.
“An estimated 116,900 people live with Parkinson’s in California — the highest number of people with the disease in the country,” Ted Thompson, MJFF’s senior vice president of public policy, said in a press release.
First enacted in 2004, the registry aims help scientists look for a cure by acquiring, recording, and analyzing Parkinson’s data throughout the state.
Patterns and trends in how the disorder affects different populations by race, ethnicity, socioeconomic status, and history of exposure to occupational and environmental toxins can help researchers identify “hot spots” of unexpectedly high Parkinson’s rates.
Connections between these factors and Parkinson’s may help deepen our understanding of the disorder.
“We need collaborative investments in Parkinson’s to move the dial on research and find a cure,” Thompson added.
Although California’s legislature voted to provide state funding in 2017, this
nearly was discontinued in 2021 due to COVID-19-related financial priorities. The MJFF helped bridge this funding gap with a $380,000 contribution earlier this year.
“Public policy initiatives like this registry can have a direct and lasting impact on how the research community does its work — data collection is absolutely critical so that researchers can view the full picture of a disease,” Thompson said.
The CPDR will use the new funding to expand its data collection efforts for Parkinson’s and other neurological disorders. The MJFF also encourages expanding data collection efforts beyond Parkinson’s through a neurological disease coalition.
Along with its support for research programs at various California institutions, MJFF’s contribution to the CPDR brings its investments to Parkinson’s research in the state to more than $190 million.
Data collected for this registry also will be used to assist national Parkinson’s data collection efforts, such as the National Neurological Conditions Surveillance System from the U.S. Centers for Disease Control and Prevention.
“Scientific discovery is moving faster than ever before, and we need all hands on deck when it comes to Parkinson’s research,” said Michael Sweet, an MJFF public policy advocate in Lakewood, California.
“I live with Parkinson’s disease,” he added, “and know the power this registry will have in educating researchers and providing the data they need.”