The California Parkinson’s Disease Registry (CPDR) will continue through June 2021, after gaining support from the state’s governor and $380,000 in extension funding from the Michael J. Fox Foundation for Parkinson’s Research (MJFF), the foundation announced.
Due to the economic toll of the COVID-19 pandemic and associated research costs, California considered discontinuing its support for the registry, which opened in 2004. But Gov. Gavin Newsom recently signed a bill extending it through June.
“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,” said Ted Thompson, senior vice president of public policy at MJFF, in a press release.
An estimated 116,900 people with Parkinson’s disease live in California, making it home to the largest number of patients among states in the U.S.
Though several genetic and environmental factors have been linked to the onset of Parkinson’s, no direct cause is known.
Registry data is used to examine trends in Parkinson’s, with respect to traits such as socioeconomic status, race, ethnicity, and patient exposure to chemical or environmental toxins.
The CPDR makes use of this state’s large population and ethnic diversity in studying the epidemiology of Parkinson’s.
State legislation requires healthcare providers diagnosing or treating a Parkinson’s patient to file reports with the state that are fed into the registry.
Registry data supports work by researchers in California and elsewhere, including scientists with the National Neurological Conditions Surveillance System, part of the U.S. Centers for Disease Control and Prevention.
Some California residents are urging state lawmakers to incorporate the CPDR into annual state budget funding.
“With advances in science happening more rapidly than ever before, we need all possible hands on deck when it comes to Parkinson’s research,” said Michael Sweet, a Parkinson’s patients who lives in Lakewood. “I call on Governor Newsom to … provide recurring funding in the state budget every year. California has the highest number of people with Parkinson’s in the United States, and we are counting on him to do the right thing for Californians and the rest of the country.”
MJFF awarded a $750,000 grant to the University of California, Los Angeles earlier this year to make the CPDR more efficient by establishing standards for reporting Parkinson’s cases and improving its interface.
Since its founding in 2000, the MJFF has invested more than $147 million in Parkinson’s research underway in California.
“This registry is a critical data collection effort that could transform Parkinson’s care and treatment,” said Todd Sherer, PhD, foundation CEO. “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.”
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