The government order of 6 November 1995 pertaining to the Comité National des Registres (National Register Committee) defines a register as "a continuous and exhaustive collection of nominative data concerning one or more health events in a geographically defined population, for research and public health purposes, by a team with appropriate competences."
More precisely, a medical register is an anonymous and secure database, whose objective, for a set of patients sharing a common characteristic, is to inventory a number of precise data: date of birth, pathology, treatment, etc. These data points are defined during the constitution of the register.
Registers provide better knowledge of rare pathologies and/or studied treatments. Regarding rare diseases, as the number of patients is relatively low, it seems important to create registers on a national scale in order to move knowledge of the pathology forward. All of the data will eventually provide better treatment for the patient.
Below, you will find the list of registers in which professionals from the network’s centres collect patient data:
French epidemiological register of oesophageal atresia
Register manager: Dr Rony SFEIR
Clinical research representative (ARC):Katialine GROFF
Unité de Chirurgie viscérale et urologique pédiatrique (Paediatric visceral and urological surgery unit)
Infantile Surgery Department
CHRU de Lille - Hôpital Jeanne de Flandre
Avenue Eugène Avinée
59037 LILLE CEDEX – France
ARC contact: +33 (0)3 20 44 60 58 Extension 30475
Reference centre: CRACMO (consult the "register'’ page on the CRACMO website)
National register of diaphragmatic hernias
Register manager: Dr Nicoleta PANAIT
Clinical research representative (ARC): Elisabeth AHOUMA
Reference centre on diaphragmatic hernias
La Timone Enfants
264 rue St Pierre
Administrative office: +33 (0)4 91 38 84 71 / Fax: +33 (0)4 91 38 47 14
ARC contact: +33 (0)4 91 38 66 64 / Fax: +33 (0)4 91 38 64 61