Krysinska Karolina, Sachdev Perminder S, Breitner John, Kivipelto Miia, Kukull Walter, Brodaty Henry
Faculty of Medicine, Dementia Collaborative Research Centre, School of Psychiatry, University of New South Wales (UNSW Sydney), NSW, Australia.
Faculty of Medicine, Dementia Collaborative Research Centre, School of Psychiatry, University of New South Wales (UNSW Sydney), NSW, Australia; Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, University of New South Wales (UNSW Sydney), NSW, Australia; NPI, Euroa Centre, School of Psychiatry, UNSW Sydney, NSW, Australia.
Alzheimers Dement. 2017 Sep;13(9):1031-1047. doi: 10.1016/j.jalz.2017.04.005. Epub 2017 May 30.
Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. We identified 31 dementia registries operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. We present evidence of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers.
患者登记系统是有助于应对研究、医疗和政策方面重大挑战的宝贵工具。登记系统在医学和公共卫生的许多领域已广泛应用，但在痴呆症领域相对较新。本系统综述介绍了全球痴呆症登记系统的现状。我们确定了1986年至2016年间在国际、国家或地方层面运作的31个痴呆症登记系统。超过半数的登记系统旨在开展或促进研究，包括临床前研究登记系统和招募研究志愿者的登记系统。其他痴呆症登记系统收集流行病学或医疗质量数据。我们展示了登记系统在研究、临床实践和政策方面的实际和经济成果证据，以及对未来发展的建议。招聘方法和最低数据的全球协调将有助于进行国际比较。登记系统提供了积极的投资回报；其建立和维护需要政府、政策制定者、研究资助机构、临床医生以及痴呆症患者及其护理人员的持续支持。
