Based on this experience, a unique epidemiological information system was implemented, called BaMaRa, in line with international recommendations, 9 which allows the secure collection and deidentified centralization of medical data from all patients followed-up in rare disease expert network. 8 CEMARA has thus been deployed in nearly half of the rare disease centers. 7 Additional collections were possible to answer targeted research questions. 4, 5 Built around a single and restricted set of data, shared by all the participating centers, 6 CEMARA made it possible to collect the activities carried out by the care team over time and to specifically code rare diseases thanks to the use of the Orphanet nomenclature. This is how the CEMARA database was created in 2007 at the Necker Enfants Malades Hospital of the Assistance Publique-Hôpitaux de Paris (AP-HP). 3įor this data collection, this expert rare disease network first turned to local solutions to record their activity on rare disease patients. To promote epidemiological surveillance for rare diseases, 3 successive national plans dedicated to rare diseases focused on the development of appropriate nomenclature for rare diseases and data collection of patient care data from the expert rare disease network, organized within 23 rare disease major medical specialties. 2 In the absence of dedicated codes, they are often identified with nonspecific or aggregative codes, making it impossible to analyze rare diseases using this database. Indeed, diagnoses are coded in routine using international classification of diseases version 10, which poorly describes rare diseases. Meanwhile, this database is not useable to study care pathways of most patients suffering from rare diseases. The data recorded in routine include information on the use of care, hospitalizations, disability, services social, and professional activity. France is one of the few countries that benefits from a centralized health insurance database covering exhaustively and permanently the entire population.
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