Study Rationale: The state of West Virginia has one of the nation’s highest rates of Parkinson’s disease (PD), a condition for which the causes are not well understood and there is no cure. In April 2022, a new law made West Virginia the fourth state to mandate establishment of a PD registry. West Virginia is well positioned to design a registry that could maximize research and clinical advancements, as its registry will be the first to be based at a land-grant university and the first to track PD in the Appalachian region.
Hypothesis: Strategic design of a PD registry that incorporates nuanced and complex issues such as data sourcing, data integrity, identification of key information, process for input, interoperability, collaboration and regulatory landscapes could optimize outcomes and foster insights regarding incidence, symptom manifestation, treatment efficacy, and cogent information about patterns related to disease.
Study Design: A team from the West Virginia University (WVU) Rockefeller Neuroscience Institute will facilitate stakeholders to support an understanding of strategic choices and design options for an optimized West Virginia PD Registry. This grant would enable curation of best practices, lessons learned, industry standards, regulatory and technology landscapes, and collaboration with national experts as well as a WV-based advisory committee to assist in the potential design and development of a registry which may include systems for collecting key data, disseminating information about registry use, and effectively engaging with state and national stakeholders such as The Michael J. Fox Foundation.
Impact on Diagnosis/Treatment of Parkinson’s disease: Establishment of a state-of-the art West Virginia PD Registry could significantly power progress toward new treatments and a cure for people with PD. Data collected through the West Virginia PD Registry could support a better understanding of factors such as incidence, prevalence, location and treatment of PD.
Next Steps for Development: The West Virginia PD Registry could be made available for researchers, clinicians, patients, policy makers and other stakeholders around the world to use for clinical and epidemiological research into therapies, genetic links, and demographic links, potentially facilitating the prevention and cure of PD.