That's it JD thanks! I'll read it now.
Yes, Katie it is tragic that sometimes clinical trials result in unpleasant outcomes. The thing is usually - and in the case of the gene therapy in the past - the deaths were in early trials which don't involve many people and often they recruit people that are in late stage cf I do believe. And of course studies are always conducted on animals first and most side effects are discovered before going into people.
I heard recently that 1/3 of the cf population is going to have to participate in clinical trials in order to keep up with the pace that meds/treatments are moving through the pipeline. We all need to deeply consider trial participation. I was in the Vertex VX-770 2b trial and it was a great experience.
Always remember that you'll receive a detailed description about the med & known side effects before participation consent and you can always bail out at any point.
In my opinion, more of us should move ahead with paricipation, gather info and then make a decision. To sit back and think that all are the same and either you should or shouldn't participate is naive. Each one has intricacies that could make it really great or not so for you to participate.