AUTHOR=Wu Allan D. , Wilson Andrew M. TITLE=Parkinson’s disease population-wide registries in the United States: Current and future opportunities JOURNAL=Frontiers in Digital Health VOLUME=5 YEAR=2023 URL=https://www.frontiersin.org/journals/digital-health/articles/10.3389/fdgth.2023.1149154 DOI=10.3389/fdgth.2023.1149154 ISSN=2673-253X ABSTRACT=

Parkinson’s disease (PD) is a neurodegenerative disease with both genetic and environmental risk factors. Efforts to understand the growing incidence and prevalence of PD have led to several state PD registry initiatives in the United States. The California PD Registry (CPDR) is the largest state-wide PD registry and requires electronic reporting of all eligible cases by all medical providers. We borrow from our experience with the CPDR to highlight 4 gaps to population-based PD registries. Specifically we address (1) who should be included in PD registries; (2) what data should be collected in PD case reports; (3) how to ensure the validity of case reports; and (4) how can state PD registries exchange and aggregate information. We propose a set of recommendations that addresses these and other gaps toward achieving a promise of a practical, interoperable, and scalable PD registry in the U.S., which can serve as a key health information resource to support epidemiology, health equity, quality improvement, and research.