Clinical research in cystic fibrosis
In the European study network ECFS-CTN and in the DZL we are involved in various multicenter studies, especially on personalized therapy of the basic defect of CF with potentiators and correctors in all age groups (see publications ).
If new drugs are to be investigated with regard to their tolerability and effects in CF, we often receive a feasibility request via the national and international networks of clinical trials and we then also participate in many of these clinical trials. This applies, for example, to new inhalation preparations and currently to the treatment of fungal infections in cystic fibrosis.
One focus of our clinical research is the athletic activity and performance of CF patients in childhood and adolescence as well as the improvement of motivation, adherence, quality of life, transition and psychosocial influencing factors (see publications).
Our CF outpatient clinic has been contributing data to the German Cystic Fibrosis Registry for more than 20 years and was instrumental in establishing it in its early days. Through this participation, we contribute to the use of clinical data of many German cystic fibrosis patients. These data are used for various scientific questions and application observations. They also serve to improve the quality of CF care in the sense of benchmarking and enables the annual data report of cystic fibrosis patients in Germany.