The National Alzheimer's Bank: A Tool for the Epidemiological Monitoring of Dementia in France?

Given the expected increase in the number of people with Alzheimer’s disease or other forms of dementia (ADOD) in France, the establishment of an operational epidemiological surveillance system is essential. Complementing cohort data and medical-administrative databases, the National Alzheimer’s Bank (NAB), which systematically collects data from patients visiting a memory clinic (MC) or a memory resource and research center (MRRC), offers significant potential for monitoring ADD. We analyzed the strengths and weaknesses of the BNA for the production of relevant ADD surveillance data. Using a dataset comprising data from approximately 560,000 patients enrolled between January 2010 and December 2014, we analyzed the quality of the collected data and then assessed the feasibility of developing indicators for disease prevalence and prognosis. While in theory the BNA includes all patients consulting a CM/CMRR in mainland France, it was not possible to verify the completeness of the cases in the database. Furthermore, we identified certain shortcomings in the quality of the collected data (missing values, inconsistencies, coding errors, etc.). Added to these shortcomings is the lack of information regarding the representativeness of patients consulting CM/CMRRs relative to the general population and the absence of longitudinal follow-up for all patients. All these factors constitute a major obstacle to the use of the BNA, in its current form, for the production of MAAD surveillance indicators. Nevertheless, the large number of MAAD cases identified using a definition of quality standardized across centers and the detailed identification of the various subtypes of dementia—rarely studied in cohorts—are major arguments for undertaking its improvement. Several actions must be taken to enable the integration of the BNA into the MAAD surveillance system: 1. ensure comprehensive reporting of information for all patients consulting a CM/CMRR; 2. improve the quality of the data collected; 3. assess the representativeness of BNA cases relative to those in the general population; 4. Link the BNA to medical-administrative databases to enable longitudinal follow-up of well-validated cases of dementia. These fundamental points are being discussed within working groups as part of Measure 16, “Sustaining and Improving the BNA,” of the “Neurodegenerative Diseases 2014–2019” plan, in which Santé publique France participates.

Author(s): Carcaillon Bentata L, Thuret A, Beltzer N, Trifatene K, Robert P

Publishing year: 2017

Pages: 86 p.

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