French National Programme on Rare Disease Cohorts

  The Rare Disease Cohorts Programme « RaDiCo » is coordinated by « Inserm », the French Institut of Health and Medical Research. RaDiCo is a part of the « Investissements d’Avenir » cohorts programme, managed by the National Agency of Research « ANR » IO-COHO-03.

BNDMR and BaMaRa

The RaDiCo program is tightly linked to the BNDMR project head by Prof. Paul Landais, who is also the coordinator of the RaDiCo program. BNDMR was created as part as the National Rare Diseases Plan 2 (PNMR2) running from 2011 through 2014. It aims at fulfilling the need for data collection and analysis on rare diseases, in order to improve the care offer for patients, with respect to the severity and outcomes of their diseases. BNDMR notably relies on BAMARA, a rare diseases database, that includes a minimal set of data[R1] , based on

A BNDMR working group, steered by Paul Landais, who is also acting as scientific coordinator of RaDiCo, has been set up by the Ministry of Health. The group's mission is to collect and analyze the existing status of the data collected by the CRMR and their support; define a national RD minimum data set (MDS) and define the policy for data collection.

The project is designed to implement a National Rare Diseases Database to collate the data of patients presenting with RD in order to elucidate the epidemiology and public health aspects of those diseases in France. The National Rare Diseases Plan 2 (PNMR2) has defined the major objectives of the project.

The development of the BNDMR is based on the CRMR network. The MDS is intended to minimize the number of data collected by each center. The MDS is applicable to all the patients attending the CRMR. The MDS promotes communication with hospital care IT systems. The MDS uses an anonymous national identifier that is compatible, technically and legally, with the other national databases. The MDS meets a first series of national objectives:  matching RD care offer and demand;  assisting patient inclusion in cohorts and clinical trials.

Data collection is oriented toward the interoperability of information systems. Collection is based on a limited and consensual common language since the national RD MDS promotes the identification of RD patient and the monitoring of healthcare procedures.

BaMaRa is an application that communicates with patient files, industrial applications, national registries and databases, and is currently being compiled. BaMaRa will operate within a simplified legal framework (non-opposition and declaration) with a charter proposed to all players.

 [R1]Phrase difficile à comprendre dans la version française