I hope you will have seen or heard the news today of the positive results of a gene therapy trial for people with cystic fibrosis. And this is how The Guardian is reporting it. Although it is early days and the improvement shown in patients only a modest one, it is nonetheless a very hopeful … Continue reading Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research
Why shouldn't you and I be able to take part in appropriate and relevant research as part of our NHS care and treatment? Why shouldn't we be able to expect to have that discussion with our doctor as part of our diagnosis and care? Why shouldn't we be able to access research evidence so we … Continue reading NIHR looks to go PROACTIVE with plan for research participation and engagement
I am. Or rather I was. But I am trying to change. Once upon a time it was only Government Ministers who turned up five minutes before their piece, said what they had to say, then left. It's not uncommon for them to depart the podium without even answering questions. And then there are those … Continue reading Are you a speaker who eats, speaks and leaves? Then listen up.
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 … Continue reading Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy