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Parkinson’s disease population-wide registries in the United States: Current and future opportunities

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-wi...

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Autores principales: Wu, Allan D., Wilson, Andrew M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10073707/
https://www.ncbi.nlm.nih.gov/pubmed/37035478
http://dx.doi.org/10.3389/fdgth.2023.1149154
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author Wu, Allan D.
Wilson, Andrew M.
author_facet Wu, Allan D.
Wilson, Andrew M.
author_sort Wu, Allan D.
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description 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.
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spelling pubmed-100737072023-04-06 Parkinson’s disease population-wide registries in the United States: Current and future opportunities Wu, Allan D. Wilson, Andrew M. Front Digit Health Digital Health 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. Frontiers Media S.A. 2023-03-22 /pmc/articles/PMC10073707/ /pubmed/37035478 http://dx.doi.org/10.3389/fdgth.2023.1149154 Text en © 2023 Wu and Wilson. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) (https://creativecommons.org/licenses/by/4.0/) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Digital Health
Wu, Allan D.
Wilson, Andrew M.
Parkinson’s disease population-wide registries in the United States: Current and future opportunities
title Parkinson’s disease population-wide registries in the United States: Current and future opportunities
title_full Parkinson’s disease population-wide registries in the United States: Current and future opportunities
title_fullStr Parkinson’s disease population-wide registries in the United States: Current and future opportunities
title_full_unstemmed Parkinson’s disease population-wide registries in the United States: Current and future opportunities
title_short Parkinson’s disease population-wide registries in the United States: Current and future opportunities
title_sort parkinson’s disease population-wide registries in the united states: current and future opportunities
topic Digital Health
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10073707/
https://www.ncbi.nlm.nih.gov/pubmed/37035478
http://dx.doi.org/10.3389/fdgth.2023.1149154
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