ArticleFrontiers in digital health2023
Parkinson's disease population-wide registries in the United States: Current and future opportunities.
Article in Frontiers in digital health, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Case Definitions and Data Sources for NNCSS Parkinson Disease Surveillance: A Systematic Review.JAMA network open · 2026Pooled it
- Iranian Deep Brain Stimulation Registry for Parkinson's Disease (IDBSR-PD): establishment and feasibility study.Acta neurologica Belgica · 2026Article
- Parkinson's disease in real life healthcare organization database: a medication-based algorithm.BMC neurology · 2026Article
- Development and application of a clinical core data set for deep brain stimulation in Parkinson's disease, dystonia or tremor: from data collection to data exchange and data sharing.Neurological research and practice · 2025Article
- AccessPD as a next generation registry to accelerate Parkinson's disease research.NPJ Parkinson's disease · 2024Article
- Real-world outcomes of Deep Brain Stimulation for dystonia treatment: Protocol for a prospective, multicenter, international registry.PloS one · 2024Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
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