With data starting in 2010, the BNDMR (Banque Nationale de Données Maladies Rares) is a French National Rare Disease Data Registry offering healthcare professionals the ability to collect a minimum data set (MDS) common for all patients in addition to other different complementary data collections for specific care purposes via the BaMaRa application. BaMaRa allows the secure collection and deidentified centralization of medical data from all patients followed-up in BNDMR, based on a minimum data set (SDM-MR). SDM-MR is made up of 60 interoperable items and is routinely collected through BaMaRa in rare disease centers as part of care and discharged into BNDMR after deidentification and data reconciliation. Data access is regulated by a scientific committee. The BaMaRa-BNDMR infrastructure provides an administrative and epidemiological resources for rare diseases in France.
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