This week, Dr Janet Allen, Director of Research & Care at the Trust, has swopped frozen England for sunny Spain, and the European Clinical Trials Network conference as part of the Cystic Fibrosis Europe meeting. Here’s what’s been going on.
Every January, the research-active organisations across Europe that represent people with cystic fibrosis (so the Cystic Fibrosis Trust in the UK) come together to share experience and knowledge under the umbrella organisation known as Cystic Fibrosis Europe (CFE). At the same time, we meet with colleagues in the European Clinical Trials Network or ECTN. This network was set up by CF physicians to coordinate clinical trials across selected centres in Europe. By working together, we can increase the number of trials running in Europe and attract international global companies to bring their clinical studies to Europe.
It’s the end of January, so where better to have a meeting than in Barcelona, or more accurately a town just outside Barcelona: to swap cloudy, windy, cold Bromley for blue skies and a slightly warmer environment! However, before anyone gets carried away, I can say we have been stuck in a stuffy room all day and the blue skies have not been seen as we debate methods to increase access to clinical trials, standardisation of protocols and better ways of getting protocols adopted through many different languages. The commitment and passion of the ECTN members to improving access to clinical trials across Europe is remarkable, especially when I realise that all the discussions are in English, even though for the vast majority, English is not their native language.
The ECTN has been running for a number of years and initially involved 25 centres across Europe; five of which are in the UK – Belfast, Birmingham, Royal Brompton, Leeds and Nottingham. The Cystic Fibrosis Trust provided financial support to help form the ECTN over the last three years.
The ECTN has been very successful and there are now plans to expand the number of participating centres by 10. They have been tracking the number of trials and can show an increase over the last few years. In addition, the ECTN has been instrumental in assisting in trial design and doing feasibility studies.