The Cystic Fibrosis (CF) Trust launched its new five-year research strategy in London yesterday. I have to say I am highly impressed. In terms of content and dissemination they seem to have single-handedly shown the rest of the medical research charity sector how to embrace the future as a funder and a patient group.
Why is it so good? Well, the research strategy is clear and visionary. It seems to strike the right balance between basic research and clinical research. But it’s more than that for me. Most important is the firm commitment to ‘Enhancing the involvement of people with cystic fibrosis in shaping research’ as one of its three enabling piorities. I also like their very simple but effective ‘SCORE’ approach to evaluating potential research ideas to fund. It’s about time more charities came out with similar focus and simple creativity.
I’m also pleased that CF Trust’s new approach to research is available to a wider audience using Cystic Fibrosis Unite among other devices. As I found out after I did the first (perhaps exciteable!) version of this blog CFUnite is independent of the CF Trust and funded by a Wellcome Trust People Award. But my excitement is not totally unfounded.
I love the fact that CF Unite embraces and pulls in all possible partners in making research happen – you really do want to be part of the enterprise. On the CFUnite site you can register your interest to help design and take part in clinical studies. And you can email them if you want to find out the results of relevant trials. This is just the sort of thing we should be doing in the name of transparency and in the public interest. You can find all these features here.
CF Trust complements this with its own cross-referencing and linking to CF Unite but also by giving people information on clinical trials taking place in the UK. This is a facility that it has made available for some time and shows its long-term commitment to making sure this sort of information is in the public domain.
Its a worthy package that has made my day.