WHAT IS THE BNDMR?
BNDMR is a secure national database of health data, implemented as part of the French National Rare Disease Plans (PNMR), aiming to create a homogeneous collection of medical data regarding patients suffering from rare diseases monitored in French centres.
The BNDMR is authorised by CNIL (French National Commission of Information Technology, Data Files and Civil Liberties) (No. 2019-113 of 5 September 2019).
Its objectives are:
- To better document the patient's pathway and their disease
- Better organise the treatment network, helping to better describe the demand for care and its compatibility with supply
- Make the rare disease activity visible and help with regulatory reporting by knowing the number of active cases, the turnaround time for diagnosis, the distribution of diagnosed cases, the treatment method, etc.
- Facilitate research by identifying patients eligible for clinical trial implementation
- Assess the impact of national rare disease plans on patient treatment
WHAT DATA ARE COLLECTED?
A minimum set of national rare disease data (SDM) shared by all actors and by all diseases has been defined to enable structured collection of high-quality data exploitable throughout France. It must be collected from each patient suffering from a rare disease treated in a rare disease reference or competence centre.
This SDM has about 50 items regarding:
- Consent (regulatory)
- Patient examination
- Care pathways
- Vital signs
- Consult the minimum data set
WHAT INFORMATION IS COLLECTED?
To minimise the data entry workload, this data set may eventually be collected directly in the Digitised Patient File (DPI) at the treating hospital of the patient seen in a reference or competence centre (connected mode).
The BaMaRa application was also developed to give everyone the possibility to collect data even in the absence of a compatible patient file (standalone mode). Each health care facility has its own BaMaRa database.
DATA ENTRY FOR WHAT PURPOSES?
- Access, filter and download your patient lists
- Know your rare disease activity numbers (PIRAMIG)
- Monitor your number of active patient cases
Query the base to conduct:
- Epidemiological and medical-economic studies
- Multi-centric studies
- Nationwide studies
Network mission managers assist expert centres in deploying BaMaRa. They participate in training expert centres in the use of BaMaRa and offer their help to competence centres to create patient sheets in the DPI or BaMaRa. Do not hesitate to write to them for assistance at firstname.lastname@example.org
For more information:
- Learn about progress on BaMaRa deployment
- Know the precise operation of the BaMaRa application and rules to follow for the collection of raw disease data, in standalone or connected mode.
- Download the "patient" form to print out, covering BaMaRa items
- Download our flyer "BNDMR: objectives and set-up" to have a summary of BNDMR objectives and identify your regional FIMATHO contact