BNDMR & BaMaRa
The Banque Nationale de Données Maladies Rares (BNDMR) is a priority project of the Plan National Maladies Rares 2, funded by the French Ministry of Health.
The aim of this secure national database is to document the path taken by rare disease patients in expert centers, based on a “Minimum Data Set”.
OBJECTIVES :
The purpose of the BNDMR is to :
- Better documentation of patients and their illnesses
- Better organization of the care network
- Making rare disease activity visible and helping with regulatory reporting
- Facilitating research in the field
- Better exploit the potential of large national databases
MINIMUM DATA SET (SDM) :
The SDM is used to collect care data for every patient suffering from a rare disease. It is common to all players and all diseases.
Data is collected either by :
- Local input application: BaMaRa
Data is collected in “stand-alone” mode, i.e. entered directly into the web application.
- The rare disease form integrated into the computerized patient record (DPI) :
Data is collected during the management of patients seen at the expert centers. The “connected” mode is based on the interoperability of hospital information systems (HIS) with BaMaRa. As a result, data collected in the rare diseases file of the DPI will be automatically transferred to BaMaRa.
TO FIND OUT MORE :
