MADISON – Members of the newly created Parkinson’s Disease Alliance of Wisconsin are proud to join State Senator Rachel Cabral-Guevara (R-Appleton) and State Representative Lisa Subeck (D-Madison) as they introduced new powerful, bi-partisan legislation that would establish a Parkinson’s Disease Registry in Wisconsin.
“Parkinson’s Disease is the fastest growing and second-most common neurodegenerative disease with approximately 21,000 Wisconsinites living with Parkinson’s. I lost my husband Rick to a thirteen year battle with Parkinson’s and now I too am one of those individuals living with Parkinson’s,” shares Stephanie Johnson, Founder & Director of the Parkinson’s Disease Alliance of WI. “Currently Wisconsin has no systematic way of tracking the incidence and prevalence of Parkinson’s but we can change that by passing legislation to create a powerful registry.”
A Parkinson’s disease registry is crucial for several reasons: it helps track the prevalence and progression of the disease, it informs public health planning, facilitates research, and it aids in clinical trial recruitment.
“We have an incredible opportunity to establish a statewide registry that can help us identify high-risk groups, detect prevalence patterns among Wisconsinites, and to uncover disparities in treatment in marginalized communities,” notes Sarah Davis, JD, MPA, Distinguished Clinical Professor of Law.
By gathering comprehensive data on Parkinson’s disease cases, registries can provide valuable insights into the disease’s impact on different populations and potentially identify risk factors, ultimately leading to better treatment and care strategies.
“The Wisconsin Parkinson’s Disease (PD) Registry is the key we need to unlocking information about how the disease affects Wisconsinites,” shares Brian Nagle, MD, MPH Assistant Professor (CHS) Department of Neurology UW School of Medicine and Public Health. “This registry will not only be helpful for the purposes of research to gain insight into how widespread PD is in Wisconsin and help to identify potential environmental factors or triggers that may contribute to disease onset, but will also be pivotal in shaping state policy and allocation of resources to help those who are affected by PD.”
When this legislation passes, Wisconsin will join 15 other states in collecting health information about people living with Parkinson’s Disease in a way that supports patients’ privacy and dignity and advances science and healthcare. Registries already exist in: California, Connecticut, Kentucky, Massachusetts, Maryland, Missouri, Nebraska, Nevada, New York, Ohio, South Carolina, Utah, Virginia, Washington, and West Virginia.
The Parkinson’s Disease Alliance of Wisconsin encourages Wisconsinites to reach out to their elected representatives in the State Legislature to encourage their support of this legislation. For more information and to take action, individuals are invited to visit www.pdalliancewi.org.
Quotes of support for the Wisconsin Parkinson’s Disease Registry
“The Davis Phinney Foundation strongly supports the creation of a Wisconsin Parkinson’s Disease Registry. By gathering accurate statewide data, the Registry will give researchers, clinicians, and policymakers the information they need to improve care and resources—ultimately helping people with Parkinson’s and their families live well today.” – Polly Dawkins, The Davis Phinney Foundation Executive Director
“The American Parkinson Disease Association applauds the Parkinson’s Disease Alliance of WI on its leadership in pursuing the establishment of a PD registry and proudly lend our support to this important effort. APDA tirelessly supports the PD community through education, resources, and research, and registries play a vital role in understanding Parkinson’s prevalence and recruiting patients for clinical trials that drive new treatments.” – Leslie A. Chambers, APDA President & CEO
“The Wisconsin Parkinson’s Disease Registry is essential to advancing care and treatments for PD across the state and neighboring communities. With support from a WI PD Registry Bill, our NIH- and VA-funded research can expand significantly, enabling faster recruitment for studies on disease mechanisms, outcomes, biomarkers, and imaging. A strong registry is critical to slowing progression and improving the lives of patients and families, and team science is key to advancing PD care in Wisconsin.” – Kathleen Shannon, MD, FAAN, FANA, Chair, Department of Neurology and Jane Paulsen PhD, Professor & Vice Chair for Research Department of Neurology
“What gets measured, gets managed. To stem the tide of Parkinson’s disease in Wisconsin and nationally, we need to measure it well. A registry is the step in the right direction.” – Ray Dorsey, MD, MBA, Co-Author of The Parkinson’s Plan: A New Path to Prevention
“At The Michael J. Fox Foundation for Parkinson’s Research, we’re committed to improving diagnosis, accelerating new and improved treatments and ultimately, finding a cure for Parkinson’s disease. By establishing a statewide Parkinson’s disease registry, Wisconsin will join 15 states in helping to achieve those goals by providing researchers with invaluable data to track incidence and prevalence, identify at-risk groups and better understand how the disease progresses over time. We thank Senator Cabral-Guevara and Representative Subeck and the Parkinson’s Disease Alliance of Wisconsin for championing this important legislation and urge the Legislature to act quickly to make this registry a reality.” – Julia Pitcher, Director of State Government Relations at The Michael J. Fox Foundation
Information collected through a registry will fuel research for better prevention and treatments, inform public health policy and infrastructure planning, and help connect people with Parkinson’s to clinical trials and potential participation in studies. A registry will also provide a platform for patients and researchers to learn, share information, and work together to improve care and find a cure” – Rob Gundermann, President & CEO, Coalition of Wisconsin Aging and Health Groups
“The Wisconsin Aging Advocacy Network (WAAN) supports the creation of a comprehensive Parkinson’s Disease (PD) registry for the many benefits it will provide to our state, including being a powerful tool to collect essential population data to advance research and public health. By providing a clearer picture of PD prevalence and identifying high-risk groups, the registry will help inform policy, secure research funding, and help accelerate the search for prevention, treatment, and cures.” – Janet Zander, WAAN Advocacy & Public Policy Coordinator
“The Wisconsin Parkinson Association strongly supports the creation of a Parkinson’s disease registry in Wisconsin to help better understand the true impact of Parkinson’s across our state. This vital tool will provide accurate data to improve care, drive research, and ensure families affected by Parkinson’s receive the resources they need.” – Kelly Cieslak, President & CEO Wisconsin Parkinson’s Association
