Data on dementia and dementia care remain extremely limited and can hamper efforts to improve quality of care and outcomes. France is among the few countries which have developed a dedicated process to collect, store and share data on dementia. The next step is to link this Alzheimer data bank with other large national data sets:
1/ Context of creation
In 2008, the third French national Alzheimer plan was launched. One specific part of this plan resulted of the creation of the database aiming to provide epidemiological data as well as activity indicators. The evaluation of this plan led to launch the 2014-2019 neuro-degenerative diseases plan, and a decision to improve the quality of the BNA data and to link the BNA to other databases.
2/ How the BNA works
- The BNA registers all medical acts performed by the French memory center network (600 centers send the CIMA to BNA) including memory centers and research memory centers. More than one million persons are registered.
- 31 items are collected :
- Demographic data on the patient
- Diagnostic details
- Type of care carried out during the visit to the center
- cognitive measures such as MMSE
Every independant specialist has its own online access used to forward data and query the BNA for anonymous data
- The BNA collects more than a million patients’ data from 600 memory centers, and hence offers great opportunities for research.
Current challenges include the quality of the data collected and the link with the national health data hub, which infers complete reshaping of the BNA in order to introduce a common identifier, so as to offer a better view on the care pathway in and outside memory centers (for instance, hospitalizations, health and social care delivered).