Got a letter today from Yorkshire & Humberside Haematology Network to take part in a research study they are doing. Seems they are collecting information from people who develop blood disorders to to find out more about why they occur and what determines response to treatment.
Have to consent to blood and tissue samples being used but don't have to have any more done, their leaflet says that they will use what's left of samples taken during treatment. They also want access to all my notes from hospital and GP and need me to fill in a questionnaire.
Think I am going to do it 'cos it's the sort of stuff that I wanted to know when first diagnosed that there seems to be no answer for. Has anyone participated in anything similar?
FormerMember
Hi Jozzy,
I agreed to samples and follow up whilst been treated at Sheffield Teaching Hospitals following my Prostate Cancer diagnosis. It' perfectly safe (as safe can be), and if it helps with progress into identifying the disease, I'm happy with that. It's usually carried out by the Universities Medical Team. All you have to do is ask who's doing the research and how confidential it is.
I've recently completed a year long vaccine trial to see if they can boost the effects of Glivec on CML. Bit of a pain doing all the extra hospital visits but worth it I think. Even if it doesn't help me, it may help somebody else in the future. Also, they kept such a close eye on my blood that I think they would have detected what I had for breakfast! I also had tests on my heart and an extra bone marrow sample taken. In your case, they just want blood and tissue samples, they're not going to be shoving any drugs into you so it seems to me you have nothing to lose and might as well go for it.
Best wishes, Shelagh
PS: Still awaiting the results of this trial - 50 people took part. They said they'd send me all the data when it's ready. Also, the research nurses were lovely and so was the mad prof in charge. I was treated with the utmost courtesy and consideration.
Thanks for replies, agree there's nothing to lose and would like to contribute so have completed consents and posted them off. Checked confidentiality and everything OK, kept anonymous by allocating a number.
