Piloting a research registry for dementia: The Egyptian Dementia Network (EDN) registry

Abstract

AbstractBackgroundDementia and aging problems are currently growing worldwide and are considered public health priorities. The availability of epidemiological and clinical data on the disease greatly impacts our understanding of the disease and, hence, improves disease management and prevention strategies. As part of the development of a national dementia registry for Egypt that would be of great importance as we currently lack the exact epidemiological data and rely only on estimates, the present study is aiming to pilot a cohort for the first national registry for dementia in Egypt, The Egyptian Dementia Network (EDN) registry.MethodEDN will provide a huge set of data as a promising platform for analyzing the prevalence, incidence, and major causes of the disease in Egypt. Our study will coordinate the track of early‐onset AD (EOAD) and vascular dementia cases, which have recently shown a rising pattern, based on the first 100 cases from each cohort and a similar number of matched controls collected from different centers across Egypt.ResultAs a first stage, we developed an SOP for the registry workflow, a network of collaborating centers, and a unified sheet for data collection (both clinical and epidemiological). We will then develop a tool to register the collected data. The use of big data analytics will help analyze the collected data and identify the major causes of dementia in Egypt.ConclusionAs a research registry, the main aim is to start understanding the causes, mechanisms, and courses of dementia in Egypt. The final long‐term goal is to validate the predictive ability of the registry data on the Egyptian HCAP (Harmonized Cognitive Assessment Protocol), where the ability of data to predict future dementia patients will be tested on a longitudinal cohort of aging population.