Clinical Trial Decisions

Hi - Just read your story and so sorry for your husbands diagnosis.

Not sure whether this helps or not, but I was going to go on a clinical trial as part of a trial to see if a blood test could detect cancer DNA from a blood sample. My thoughts were that by going on the trial, whether I was in the "trial" or "control" group, I would be taken more notice of and recieve more attention than not being in a trial (although they said that everyone recieved the same level of care, even subconcisously, being part of the research is bound to be of more interest to the clinicians than just going down the "normal" treatment route - that was my reasoning for welcoming being on the trial .

HOWEVER - I decided to withdraw from the trial due to the very poor quality information and lack of attention to detail that the trial organisers seemed to be paying in informing patients of how the trial was going to be conducted and it is these reasons that I withdrew (with the support I must say of the local NHS team who backed my decision and were very supportive and grateful for me questioning the whole process - picking up on issues that even the clinical trials board, the ethical standards committe and the staff involved locally hadnt even spotted - Im not in anyway connected with health or medicine, but I am an information specialist and the information they passed out was appalling.

I cant advise on your particular situtation or the trial you might be going on , all I can advise is if you have any questions, or something in the information you have been provided with doesnt make sense, then DO ASK THE QUESTIONS. No question is too silly, and if something doesnt make sense to you, thats not a reflection on you, and is more likley a reflection on badly written or incorrect information.

NEVER BE AFRAID TO QUESTION - The medical staff like to think they are the ones with the knowledge, but sometimes that knowledge is incorrect, unclear or at best uncertain. Before you make your decision, ASK THE QUESTIONS - the doctors and those on the trial have a legal and ethical duty to provide you with the information you need to make "informed consent" to particpate in a trial - if you are not correctly informed, it is impossible to give a legal "informed consent".

Good luck with what ever your decision .