Parkinson's is the fastest-growing and second-most common neurodegenerative disease.
Approximately 21,000 Wisconsinites are living with Parkinson's.
Parkinson's costs $52 billion annually in the United States.
By 2037, the annual cost is expected to reach $80 million.
About Us
This effort was started in May 2024 by Stephanie G. Johnson, who has PD and was a care partner for her late husband, Rick, who lived with PD for 13 years. When Stephanie learned there was no systematic way of tracking the incidence and prevalence of PD in her state, she launched an effort to establish a PD Registry. Today, over 150 individuals and 15 organizations across Wisconsin are supporting the effort, including doctors, researchers, elected officials, patient advocacy groups and more.
Rick and Stephanie, October 2019
Why should Wisconsin establish a Parkinson's Disease research registry?
Parkinson’s disease has a significant impact on individuals, families, and society. People living with Parkinson's often require caregivers as the disease progresses and hinders their ability to perform daily activities such as dressing, eating, and walking. As the fastest growing and 2nd most common neurodegenerative disease (behind Alzheimer's), the impact of Parkinson's disease is expected to grow significantly.
A Parkinson's disease registry is crucial for several reasons: it helps track the prevalence and progression of the disease, informs public health planning, facilitates research, and aids in clinical trial recruitment. 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.
When Wisconsin passes it's own legislation, we will join 15 other states in collecting health information about people living with Parkinson's in a way that supports patients' privacy and dignity and advances science and healthcare. In 1996, Nebraska created the country's first PD registry.
Registries already exist in:
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California
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Connecticut
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Kentucky
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Massachusetts
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Maryland
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Missouri
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Nebraska
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Nevada
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New York
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Ohio
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South Carolina
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Utah
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Virginia
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Washington
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West Virginia
Benefits of a Parkinson's Disease Registry
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Research
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Support clinical studies
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Study links between Parkinson's Disease and environmental risk factors
Education
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Identify high-risk groups
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Produce aggregated population-level data to increase awareness of Parkinson's Disease
Policy
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Facilitate decision-making around resource allocation for prevention and treatment of Parkinson's Disease
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Contribute to progress towards a national Parkinson's Disease Registry
Organizations in support of a Parkinson's Disease Registry in Wisconsin
