Post

A huge frustration for me as a non-US cancer patient. Clinicaltrials.gov *only* covers trials that have at least one US location. To see trials local to me (in the UK), I have to search and de-dupe through a numbers of sites… 1/n

Of course clinicaltrials.gov is where I start, and it does have an excellent search API that allows me to find recruiting trials near me, but that is just the start… 2/n

The point being it is frustrating to have to put together all these different sources of information. And I consider myself a well-informed and able patient able to advocate for myself. I am hearing that ultimately some of this may get fixed by some of the digital changes planned by the NHS… 4/n

But I have my doubts over how complete coverage will be, and really a single country model is not a sensible answer. For rarer diseases, patients will almost inevitably have to seek novel treatments internationally. Really feels like something WHO should be looking at? /ends