I am interested in volunteering for clinical trials generally, is there a list out there somewhere of trials and their topics, and how to join same.
Hi @Vindicatrix, this is a great question that I am sure so many people will be interested in knowing more about. I cannot answer your question and perhaps you need to ask someone in your medical team as a starting point because they will know your medical history and suitability.
However the Blood Cancer UK and Cancer Research UK websites gives general information of how to join a clinical trial if you search clinical trials on their websites.
Others might be able to share their personal information.
Hi there is a clinical nurse working on the BCUK team who would be able to help with this. You just need to fill in an online form link at the bottom. For me my haematologist suggested the trial route for me and the most appropriate trial to go for and I ended up and still on the FLAIR trial. I have no doubt it was the right decision for me. Remember this that even though you enter a trial you have a 50% chance you will go on standard treatment as the control group, so it is not guaranteed you will get the trial drug. Additionally if you get cold feet after signing up to it you can pull out at any time.
Really interested to read this post. My medical team who generally make as little effort as possible for me, never even mentioned the possibility to me and I was just railroaded into the treatment path I went down. At the time as I was dealing with the shock and complication of being diagnosed with a disease I’d never heard of, I just accepted everything. I didn’t know that there were options because nobody told me.
Hi @Franko, I also did not know anything about my condition when I was diagnosed and thought that I just had to agree to whatever the consultant said.
Over the years, and with the support and information of this forum and Blood Cancer UK, I have realised to research into my condition (but not obsessively) and treatment options, and also to ask questions for clarification and options and ensure I understand the responses.
A big one for me is not to agree to anything until I have had time to consider my response.
What are others thoughts?