Miller Margaret C, Bayakly Rana, Schreurs Bernard G, Flicker Kimberly J, Adams Swann Arp, Ingram Lucy A, Hardin James W, Lohman Matthew, Ford Marvella E, McCollum Quentin, McCrary-Quarles Audrey, Ariyo Oluwole, Levkoff Sue E, Friedman Daniela B
Department of Epidemiology and Biostatistics, Arnold School of Public Health, University of South Carolina, Columbia, SC, United States.
Office of the Study of Aging, University of South Carolina, Columbia, SC, United States.
Front Aging. 2023 May 5;4:1179275. doi: 10.3389/fragi.2023.1179275. eCollection 2023.
Like cancer, Alzheimer's disease and related dementias (ADRD) comprise a global health burden that can benefit tremendously from the power of disease registry data. With an aging population, the incidence, treatment, and mortality from ADRD is increasing and changing rapidly. In the same way that current cancer registries work toward prevention and control, so do ADRD registries. ADRD registries maintain a comprehensive and accurate registry of ADRD within their state, provide disease prevalence estimates to enable better planning for social and medical services, identify differences in disease prevalence among demographic groups, help those who care for individuals with ADRD, and foster research into risk factors for ADRD. ADRD registries offer a unique opportunity to conduct high-impact, scientifically rigorous research efficiently. As research on and development of ADRD treatments continue to be a priority, such registries can be powerful tools for conducting observational studies of the disease. This perspectives piece examines how established cancer registries can inform ADRD registries' impact on public health surveillance, research, and intervention, and inform and engage policymakers.
与癌症一样,阿尔茨海默病及相关痴呆症(ADRD)构成了一项全球健康负担,疾病登记数据的作用能使其大大受益。随着人口老龄化,ADRD的发病率、治疗情况和死亡率正在迅速上升和变化。与当前癌症登记机构致力于预防和控制工作一样,ADRD登记机构也是如此。ADRD登记机构在其所在州维护一份全面且准确的ADRD登记册,提供疾病患病率估计值,以便更好地规划社会和医疗服务,确定不同人口群体之间的疾病患病率差异,帮助照顾ADRD患者的人,并促进对ADRD风险因素的研究。ADRD登记机构提供了一个独特的机会,能够高效地开展具有高影响力、科学严谨的研究。由于ADRD治疗的研究和开发仍然是一个优先事项,此类登记册可以成为开展该疾病观察性研究的有力工具。这篇观点文章探讨了现有的癌症登记机构如何为ADRD登记机构对公共卫生监测、研究和干预的影响提供信息,并为政策制定者提供信息并促使他们参与其中。