BNDMR — Base Nationale de Données Maladies Rares
Overview
BNDMR is the French national patient registry for rare diseases, established under the Plan National Maladies Rares 2 and funded by the Ministry of Health. Its governance was formalised in September 2015 by a convention between the Ministry and AP-HP, which was tasked with the technical implementation (maîtrise d’œuvre) of the project. BNDMR collects a harmonised minimum dataset (SDM-MR) on patients attended across the network of French rare disease reference centres (Centres de Référence Maladies Rares, CRMR) and competence centres, using Orphanet ORPHAcodes as the standard disease coding system. The BaMaRa web application, developed and made available by AP-HP, is the primary data entry tool for participating centres. Data are de-identified locally and transferred to the central BNDMR data warehouse, enabling epidemiological studies, care pathway analysis, and evaluation of national rare disease plans. It is a key national data source for rare disease epidemiology in France, supporting studies on prevalence, incidence, and diagnostic pathways across over 200 participating centres as of 2024.
Connections
- Funded by: French Ministry of Health
- Implemented by: AP-HP
- Integrates with: Orphanet
- Part of: BBMRI-ERIC