Project Summary:
This summit addresses a critical health gap: Wisconsin has no statewide mechanism for tracking Parkinson’s disease prevalence, outcomes, or environmental risk factors. As a result, health professionals, policy makers, and advocacy organizations lack the population-level data needed to improve care, identify underserved communities, and address environmental contributors to disease. An estimated 20,000 Wisconsinites live with Parkinson’s disease, yet clinicians, public health practitioners, and researchers lack shared frameworks or cross-sector coordination to close this gap.
The learning objectives of this event include:
- Identify gaps in Wisconsin's Parkinson's disease surveillance and care coordination landscape
- Establish cross-sector relationships and professional commitments to advance registry development
- Describe the components and governance of an effective state-level Parkinson's disease registry
- Develop shared frameworks for data collection, privacy, and equitable access using peer state models
To meet these objectives, the summit will bring together a keynote from a peer state with a successfully implemented Parkinson’s disease registry, Wisconsin leaders in health data collection and infrastructure, and movement disorder specialists from Wisconsin’s academic medical centers. A mix of expert presentations and facilitated collaborative sessions will build the shared knowledge, frameworks, and cross-sector networks participants need to advance Wisconsin’s first Parkinson’s disease registry.
The summit is designed for Wisconsin-based health and public health professionals who serve people living with Parkinson’s disease, alongside health technology and data collection specialists who will play a critical role in building and housing the registry. Represented fields will include movement disorder neurology, primary care medicine, nursing, social work, public health and epidemiology, healthcare administration, health informatics, and policy. Participating organizations will include the Medical College of Wisconsin, UW-Madison School of Medicine and Public Health, the Wisconsin Department of Health Services, Wisconsin-based health data and technology organizations, and community-based Parkinson’s disease advocacy organizations.
The event will be held at Wilderness Resort in Wisconsin Dells, a central Wisconsin location accessible to health professionals from urban centers and rural communities statewide. Intentional outreach will reach professionals serving communities that are underrepresented in Parkinson’s disease surveillance, including rural and agricultural communities facing elevated environmental risk, and tribal nations and other communities with limited access to specialist care.
The summit will convene approximately 25 to 35 participants, selected to represent the full range of expertise and community perspectives needed to achieve the summit’s learning objectives. This focused format ensures each participant gains concrete knowledge and cross-sector relationships they can apply directly in their own practice to improve Parkinson’s disease care and health equity statewide.