California should continue investments in Parkinson’s & neurodegenerative disease research registries

As Governor Newsom prepares his 2025 budget release this week, California’s Neurodegenerative disease groups representing hundreds of thousands of Parkinson’s, Alzheimer’s, ALS, and Huntington’s patients, are hopeful that he includes funding to continue the state’s research registries since they run out of money this fiscal year.

Under Newsom’s leadership, California has become a model for the nation and the world as it collects patient information that can help improve our understanding and treatment of diseases that are costing the state billions of dollars each year.

Since the creation of the California Parkinson’s Disease Registry in 2018 and the expansion to the California Neurodegenerative Disease Registry in 2021, this state has been a national leader advancing research that has been replicated by other states throughout the country.

This leadership dates back to 1988 when California created the Cancer Registry which has furthered our understanding of cancer and is used to develop strategies and policies for its prevention, treatment, and control. The goal of all the state’s research registries is to collect information critical to advancing the future of diagnoses and treatments and to help with prevention and ultimately cures.

California’s Parkinson’s and Neurodegenerative Disease Registries have collected hundreds of thousands of electronic records in recent years and formed partnerships with more than 500 reporting entities including health groups like Sutter, Kaiser, Dignity, Scripps and Stanford Health so that confidential patient data is automatically transmitted from healthcare providers to the state.

The Parkinson’s Registry has already supported several research projects and the Neurodegenerative Disease Registry just expanded with MS last year and is ready to start collecting other disease categories such as Alzheimer’s in July 2025.

A specific example of successful research collaboration happening in the state is the discovery of the biomarker for Parkinson’s which was a worldwide effort funded by the Michael J. Fox Foundation for Parkinson’s Research and had three California colleges participating including UCSF, UCSD, and USC. The biomarker discovery is now leading to the development of better diagnostics & could rapidly accelerate the search for treatments.

Given the wealth of research institutions and some of the best researchers in the world, along with a thriving life science and pharmaceutical industry, California may be the best bet for a brighter future for patients suffering from neurodegenerative diseases.

California can and should remain a world leader in neurodegenerative research and development. To sustain and build on the progress we’ve made takes continued investment from the state and we’re hopeful Governor Newsom can include an appropriate amount of funding in his January budget proposal for the continuation of the Parkinson’s and Neurodegenerative Disease Registries.

Julia Pitcher is Director of State Government Relations for the Michael J. Fox Foundation for Parkinson’s Research. Sheri Strahl is President & CEO of the ALS Network.