A Global Comparison of Dementia and Alzheimer Disease Registries: A Systematic Review

Context: Population aging is one of the most important health concerns worldwide, leading to an increase in the prevalence of chronic diseases such as dementia and Alzheimer disease (AD). Disease registries have great potential to determine the effect of clinical care, healthcare costs, and healthcare improvement for patients. Although there are several registries for dementia and AD worldwide, no systematic review is so far performed in this area. Therefore, the current study aimed at identifying the basic information in dementia and AD registries and comparing their characteristics.
Evidence Acquisition: The current systematic review studied the dementia and AD registries in English literature based on keywords in the title with no time limitations, using the following databases: Institute of Electrical and Electronics Engineers (IEEE), ProQuest, PubMed, Science Direct, Web of Science, Scopus, Ovid Medline, Scientific Information Database (SID), and IranMedex (earliest entry to 07 February, 2017). In the current research, only the studies related to disease registries were evaluated.
A total of 28 articles meeting the inclusion criteria were evaluated in the current study. Based on the findings, 22 dementia and AD registries were identified. The majority of the registries (13 registries) were from North America. In half of the registries, patient recruitment was performed among outpatients and inpatients referred to healthcare centers. The comparison of the structural information in these registry systems showed that they differed in terms of objectives, data sources, minimum data sets, and data quality.
The current study was the 1st systematic review of dementia and AD registries. Since there are no international standards to develop dementia and AD registries, comprehensive analysis can be effective to promote disease registry systems.