The European Cystic Fibrosis Society - Clinical Trials Network: an international network to optimize clinical research for a rare disease

Author(s): Isabelle Fajac, Veerle Bulteel, Carlo Castellani, Tim Lee, Nico Derichs,Pavel Drevinek, Luisa Pereira, Christine Dubois, Andreas LG Reimann, Kris De Boeck

The European Cystic Fibrosis Society–Clinical Trials Network was established in 2009 as an initiative of the learned European Cystic Fibrosis Society. Its aim is to optimize the development and evaluation of new and approved treatments for cystic fibrosis through efficient clinical studies in Europe. The European Cystic Fibrosis Society–Clinical Trials Network is composed of 30 selected sites across 11 European countries. Its activities are supported by a coordinating center, steering and executive committees and committees for protocol review, standardization, training, networking and data safety monitoring board. The current projects are to set up an investigator-initiated trial, to implement central laboratories for outcome measures, to move new surrogate end points forward and to facilitate quality within the network through providing a quality-improvement program. A new expansion is planned in the near future.