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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...
Autores principales: | , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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Frontiers Media S.A.
2023
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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. |
collection | PubMed |
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. |
format | Online Article Text |
id | pubmed-10073707 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Frontiers Media S.A. |
record_format | MEDLINE/PubMed |
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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