On November 20, 2024, Massachusetts Governor Maura Healey (D) signed into law an economic development package that includes a provision to establish a statewide Parkinson’s disease research registry.  

This move empowers the Massachusetts Department of Public Health (MDPH) to build a population-based database that can track health and demographic information about the 21,000 people living with Parkinson’s disease in the Commonwealth and those diagnosed in the future. The resulting data and insights could help researchers, clinicians and policymakers learn more about Parkinson’s and how to treat it by: 

• Determining accurate statewide rates of incidence (the number of people diagnosed per year) and prevalence (the proportion of people who have the disease at a given time).

• Studying patterns of the disease over time.

• Identifying high-risk groups.

• Supporting patient contact studies. 

• Improving understanding of links between Parkinson’s and environmental risk factors such as chemical exposure and military service. 

This moment is the culmination of years of work to make a Massachusetts Parkinson’s registry a reality. In 2022, the MDPH formed a Parkinson’s Disease Registry and Advisory Committee to make recommendations for the creation and implementation of a Parkinson’s research registry in the Commonwealth. 

In 2023, Senator John Cronin (D-Worcester/Middlesex) and Representative Brandy Fluker Oakley (D-12th Suffolk) sponsored legislation to formally establish the registry. Following a favorable report out of the Joint Public Health Committee in early 2024, the legislation was later included in the omnibus economic development package passed by the Massachusetts Legislature and signed into law by Governor Healey. 

When The Michael J. Fox Foundation (MJFF) began lobbying state lawmakers and rallying local advocates in earnest in 2022, just four states had taken steps to establish Parkinson’s disease registries. Today, that number is up to 14 as Massachusetts joins California, Connecticut, Maryland, Missouri, Nebraska, Nevada, New York, Ohio, South Carolina, Utah, Virginia, Washington and West Virginia. Altogether, these states cover a little more than a third of the U.S. population. 

A 2022 study supported by MJFF, Parkinson’s Foundation and the Institute for Clinical Evaluative Sciences captured the latest Parkinson’s incidence and prevalence rates in the U.S. and a federal effort to collect this data is underway at the U.S. Centers for Disease Control and Prevention. However, there is no comprehensive source for this regularly updated information as of November 2024.

States are increasingly stepping in to fill the gap by dedicating resources to develop and maintain these rich data registries. As every new registry comes online, we’re painting a more complete picture of incidence and prevalence rates in the U.S. and uncovering insights to fuel research breakthroughs.

Stay tuned as the MDPH begins implementing this important initiative in the months to come. In the meantime, 

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

• Learn more about MJFF’s 2024 Parkinson’s state policy successes.  

• Visit the Action Center to find ways to make your voice heard today.