The Belgian CF Registry : special research topics (socio-economic status and transplantation data)

The BMR-RBM (Belgian Cystic Fibrosis Registry) disposes of clinical data of 909 people suffering from CF. For 6 years the BMR-RBM has been collecting the results of clinical parameters from as many patients as possible (534 in 1998, 867 in 2003, a 62.3% increase), the results of clinical parameters. This method monitors the (natural) evolution of the disease. The questionnaire was not changed substantially and contains 200 items per patient. The BMR-RBM has to take into consideration the continuous increase in survival age. The percentage of patients18 years or older was 42.4 in 2002. For this reason it is proposed to investigate two special topics.(1) In detail investigation of the socio-economic status of patients over 14 years of age (about 400 in Belgium). Questions will be aimed at the “quality of care”(Belgian criteria) as well as at the “quality of life”(CF-14-Klijn) in CF centres. The results will probably show which parameters are most adequate for measuring the socio-economic status of persons with CF. (2) Patients that underwent a (heart)lung transplant in most cases belong to the same age group as those in (1). By creating a sub-database concerning transplantion data, a direct link will be made with the BMR-RBM database. This will ensure continuity in medical information. Physio-pathological and psychological fractures between the disease CF and the status of transplantation will be clarified