On December 13, 2024, New York Governor Kathy Hochul (D) signed into law a bill to establish a Parkinson’s disease research registry. The New York State Department of Health will now build a statewide database to track health and demographic information on the estimated 65,000 New Yorkers living with Parkinson’s disease and those diagnosed in the future. 

This win comes after years of advocacy and legislative work by the Parkinson’s community. In 2022, The Michael J. Fox Foundation partnered with the bill’s sponsors, State Senator Brad Hoylman-Sigal (D-47) and Assemblymember Amy Paulin (D-88), to begin shaping the legislation. We also rallied local advocates to build support for the bill throughout the legislative process leading to its passage with unanimous, bipartisan backing in the spring of 2024. 

More data means more research breakthroughs and better care. Parkinson’s disease manifests differently across individuals, varying in causes, symptoms, progression and response to treatment. The more information we have from highly populous, diverse states like New York, the better researchers can identify potential patterns and develop effective treatments, preventative methods and cures. 

New York is now the 14th state to take this step to help develop statewide insights to fuel our understanding of Parkinson’s disease and guide research, care and policy decisions. Connecticut and Massachusetts also established statewide registries in 2024. 

We’ll keep you updated as the state begins implementing this important initiative next year. In the meantime, 

• Sign up for the Parkinson’s Policy Network to receive timely opportunities to advocate for policy change that makes a difference.  

• Check out our 2024 Parkinson’s policy and advocacy wins.