Abstract
To help address the increasing challenges related to the provision of dementia care, dementia registries have emerged around the world as important tools to gain insights and a better understanding of the disease process. Dementia registries provide a valuable source of standardized data collected from a large number of patients. This review explores the published research relating to different dementia registries around the world and discusses how these registries have improved our knowledge and understanding of the incidence, prevalence, risk factors, mortality, diagnosis, and management of dementia. A number of the best-known dementia registries with high research output including SveDem, NACC, ReDeGi, CREDOS and PRODEM were selected to study the publication output based on their data, investigate the key findings of these registry-based studies. Registries data contributed to understanding many aspects of the disease including disease prevalence in specific areas, patient characteristics and how they differ in populations, mortality risks, as well as the disease risk factors. Registries data impacted the quality of patients’ lives through determining the best treatment strategy for a patient based on previous patient outcomes. In conclusion, registries have significantly advanced scientific knowledge and understanding of dementia and impacted policy, clinical practice care delivery.
Highlights
Dementia, Alzheimer’s disease (AD) and other neurodegenerative diseases are considered to be a major societal challenge (Weiner et al, 2018)
This review (1) describes the publication output of a number of the best-known dementia registries with high publication output, Swedish Dementia Registry (SveDem), National Alzheimer’s Coordinating Center (NACC), Registry of Dementias of Girona (ReDeGi), CREDOS and Prospective Dementia Registry Austria (PRODEM), (2) investigates the objectives and key findings of the registry-based studies to discuss how we have benefited from the data in terms of knowledge of the incidence of dementia in different populations, as well as the factors that increase patients’ mortality risk, and (3) studies the impact of registry findings on disease management and improved diagnostic procedures, treatment practices and advance our general knowledge of the disease will be discussed
To our knowledge, the United States was the first country to establish a registry for dementia disorders when they created the Consortium to Establish a Registry for Alzheimer’s Disease (CERAD) that aimed to evaluate the accuracy of AD diagnosis (Krysinska et al, 2017)
Summary
Alzheimer’s disease (AD) and other neurodegenerative diseases are considered to be a major societal challenge (Weiner et al, 2018). This paper aims to review studies that were based on registry data and evaluate the impact of these studies on advancing the diagnostic and treatment procedures for better disease monitoring, as well as, increasing our knowledge in the field. This review (1) describes the publication output of a number of the best-known dementia registries with high publication output, SveDem, NACC, ReDeGi, CREDOS and PRODEM, (2) investigates the objectives and key findings of the registry-based studies to discuss how we have benefited from the data in terms of knowledge of the incidence of dementia in different populations, as well as the factors that increase patients’ mortality risk, and (3) studies the impact of registry findings on disease management and improved diagnostic procedures, treatment practices and advance our general knowledge of the disease will be discussed
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