Post

Couple of additions to your frustrations from another non-US patient: 1. All trials should list locations in real world terms, not manufacturer secret language such as "site 21". We patients need to see which major cancer centres (and investigators) are participate. (1/2) #clinicaltrials #cansky

2. Trial descriptions should disclose dose and schedule information of all drugs involved. Have seen this withheld by manufacturers as "competitive information". How does a patient weigh up toxicity, #Qol without knowing? #clinicaltrials

Agree with assessment that a global organisation would be best positioned. For #kidneycancer we built a global search, updated every 24 hours. But clinicaltrials.gov API changed, crawler code no longer worked. It's a huge undertaking. Any success stories out there? Pan-national. #clinicaltrials

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

I then also need to search clinicaltrialsregister.eu - as a UK patient, I also need to search the ISRCTN register, and the NIHR Open data portal. There are probably others I have missed… 3/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