Engaging patients in clinical research - Clinical Trial Network celebrates 5th anniversary

This year, the European Cystic Fibrosis Society’s Clinical Trial Network (ECFS-CTN) celebrates its fifth anniversary.  To celebrate this milestone, it seemed appropriate to highlight the excellent work this network is doing in facilitating high-quality, efficient clinical trials for cystic fibrosis (CF) treatments.

Since its formation in 2008, ECFS-CTN has grown to provide access to more than 30 large and experienced CF centres across 11 European countries, which care for a total of 13,500 CF patients. Each centre is dedicated to intensifying clinical research in CF and bringing new medicines to patients as quickly as possible. Currently, there are 15 active studies underway in the network - 13 pharma-sponsored trials and two multinational investigator initiated trials.

One of the key reasons for this network’s success is its strong emphasis on the involvement of patient organisations in clinical research. Indeed, along with study design, motivating patients to take part in research and promoting the safety of participants in clinical trials are two of ECFS-CTN’s most important priorities.

Communication with patients has become increasingly important to the network over its five years of operation. In 2011-12, the network developed a brochure for patients on clinical trials, which is available on the ECFS-CTN website in no less than 10 languages. Then, building on this, 2012 saw the release of a short, easy-to-understand brochure for children.

Of course, brochures are of little use if they are not backed up with high-quality practices, which is why the network has also decided that 2013 – its fifth anniversary – will see the introduction of quality monitoring in two areas: clinical research and communication with the network. The former will include procedures to evaluate site participation and performance, taking into account the diversity of regulations and processes across Europe, while the latter will aim to ensure accurate and timely communication between sites and the coordinating centre.

We’re sure these new initiatives will only serve to enhance the already excellent example ECFS-CTN is setting for the rest of the world.

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