Registry and cystic fibrosis in figures

registry

Patients suffering from cystic fibrosis in France

 In France the number of cystic fibrosis (CF) patients is estimated at 6,800, with as many men as women. Every year the French CF Patient Registry collects data to evaluate the characteristics of the population.

In 2012, 6,196 patients were recorded by the centres participating in the French Cystic Fibrosis Registry (about 90% exhaustiveness).
 
The geographic distribution of patients shows a disparity among the departments with the majority of patients concentrated primarily in a north-west arch (the Nord-Pas-de-Calais, Haute and Basse-Normandie, Brittany and Pays de la Loire regions), and secondarily, on an eastern arch (the Lorraine, Alsace, Franche-Comté, Rhône-Alpes and Provence-Alpes-Côte d’Azur regions).

The share of adults continues to increase: they represented 38% in 2004 and now account for more than 49% of patients (in 2012), even though the population remains structurally young (average age 19.2 years).

The age at diagnosis is less than 3 months for 50% of patients.  

In 2012, 188 new patients were diagnosed: 6 by antenatal diagnosis, 124 after neonatal screening, 13 after a meconium ileus" and 41 due to other symptoms (primarily respiratory or digestive).

The worldwide scientific community has been active for several years now in terms of the discovery of treatments capable of treating the symptoms or attacking the disease at its source. Considerable progress has been made in the treatment of symptoms and current research aims to improve this strategy. At the same time, the concerted efforts in basic research are enabling the current implementation of the first clinical trials on medicines intended to treat the source of the disease. For further information

*The information provided on this website is intended to improve, not to replace, the relationship that exists between the patient (or visitor to the website) and healthcare professionals.

©Fotolia -  Sergey Nivens