The UK is a world leader when it comes to genetics, and particularly in the application of the findings of genetics to the care of patients with rare disorders. I've been at a meeting today where we have been discussing lots of research studies and how to help them meet their accrual targets, and how to cut down on the red tape associated with getting them approved in multiple centres in the UK. Northern Ireland doesn't have the same CLRN infrastructure as England and Wales, so the support models for NI have to work somewhat differently, but good ideas are good ideas, and it is fascinating to see how people go about designing studies. There are some pitfalls which seem to be rather common.
One is to assume that just because one Trust Research Office will approve a study, that another one will, without asking for substantial protocol amendments. Another is in the number of patients you're realistically going to be able to recruit. If you can recruit a larger number than your power calculations require, that's great. If not, you have to take a long hard look at the study and see what you can change to make it meaningful.
One big lesson is that there are studies out there, and they are recruiting. We owe it to our patients to let them know about studies they may be eligible for, and indeed they may actively wish to participate in. But with a plethora of studies, how do you make sure all the clinicians know of the correct studies? Tricky. There needs to be an app for that.