Patients, Providers, Researchers and Advocates Celebrate the Introduction of Legislation to Create a Parkinsons Disease Registry in Wisconsin
MADISON – Members of the newly created Parkinson’s Disease Alliance of Wisconsin are proud to join State Senator Rachael 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.
NOTE: This press release was submitted to Urban Milwaukee and was not written by an Urban Milwaukee writer. While it is believed to be reliable, Urban Milwaukee does not guarantee its accuracy or completeness.
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