Wu Allan D, Wilson Andrew M
Division of Movement Disorders, Department of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States.
Department of Neurology, David Geffen School of Medicine, University of California Los Angeles (UCLA), Los Angeles, CA, United States.
Front Digit Health. 2023 Mar 22;5:1149154. doi: 10.3389/fdgth.2023.1149154. eCollection 2023.
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.
帕金森病（PD）是一种具有遗传和环境风险因素的神经退行性疾病。为了解帕金森病发病率和患病率不断上升的情况，美国开展了多项州级帕金森病登记计划。加利福尼亚帕金森病登记处（CPDR）是最大的全州性帕金森病登记处，要求所有医疗服务提供者以电子方式报告所有符合条件的病例。我们借鉴在CPDR的经验，突出基于人群的帕金森病登记处存在的4个差距。具体而言，我们讨论了（1）帕金森病登记处应纳入哪些人群；（2）帕金森病病例报告应收集哪些数据；（3）如何确保病例报告的有效性；以及（4）州级帕金森病登记处如何交换和汇总信息。我们提出了一套建议，以解决这些差距及其他问题，朝着在美国建立一个实用、可互操作且可扩展的帕金森病登记处的目标迈进，该登记处可作为支持流行病学、健康公平、质量改进和研究的关键健康信息资源。
