Hi, just wondered if anyone with pbc has been asked to take part in a clinical trial?

[Ktb32]

I received a letter yesterday asking if I would consider taking part in this trial as doctors believe that there could be genetic factors linking to pbc, all I have to do is provide a DNA sample.

[Hidden]

I haven't received any letters as yet regarding this subject. I did once have a snoop about at any trials out there but I think I'd probably be hard pushed to take part as I really do not trust doctors. Come from bad experiences of them over the last couple decades and since being now active in the doctor system by having PBC I am finding things don't seem to change.

I think the DNA sample that you have been asked to have taken, the PBC Foundation were recruiting the very same in the last few years but forgotten what it was called. Genome seems to spring to mind. I expect if you check back on the newsletters you'll probably find it a bit more detailed in there if it is the same.

Going back to the GPs, my husband received a call the other day from surgery asking him if he wanted an over-40s health check (he is 46) and he said not (he tries to keep away like I always did pre-2010). He then got asked why he hadn't taken up the flu jab he had received a letter by post about. He said he wasn't having one of those either and then he said (I wasn't here) that he told whomever he was speaking to that seems ok they are interested in him having a check and flu jab and yet they badly treat his wife when she goes (myself).

I am now expecting a lecture on flu jab when I go in next week for the repeat bloods. Not looking forward to going this time due to the fact I have been automatically booked in with a young nurse and am already cringing because I am somehow expecting like at my last surgery this nurse to ask how much I used to drink prior to PBC!!! I did get an older nurse back in May and she said she knew a bit about PBC and she went through the bloods exactly not missing out the GGT that is the most commonly one missed with anyone with a liver problem according to the hospital consultant.

[Kaywal]

I've provided a couple of DNA samples for trials. One was definately Cambridge and one for Nottingham I think although I'm not too sure because my memory is not what it was. I sent a saliva sample in the post and gave my liver biopsy to another - they also have permission to use any samples they take from me (I don't know whether they also use my blood). They can have any part of me for research if it helps in some way towards a cure or better treatment! I do think they're worth taking part in. I've been invited to conferences off the back of the trials, although I've not yet been to one.

[littlemo]

Yes I took part in this trial all you have to do is send them a sample of your saliva. No bother in my opinion any research that helps to find a cause or cure for PBC I would take part in. I also took part in a drug trial once for PBC about the use of cholesterol reducing drugs in PBC patients. Hope you agree to take part in the DNA one the more participants they get the better. Bfn.

[Ktb32]

Thanks for your replies I'm going to give it a go for sure cause anything that can help with researching pbc will be helpful, I do think that there is some genetic factors?? Although my mom & dad are ok & have been checked I have concerns that it could effect my son when he's older (he's only 9!).

[doublewhammy]

Also had a letter from university of cambridge for a saliva sample

[crundalite]

Hi

I took part in this a few years ago via Cambridge. No hassle involved-just a saliva sample via the post. I may have filled in a questionnaire re hair dyes but this could have been from somewhere else,.. I moved house about 18 months l;ater so am not sure if there was any further info required. Don't worry -just go for it. \it can't do any harm and may do some good!

[Mayflower53]

I've also recently received a request to participate in a Cambridge based trial. I have agreed and now I am waiting for the trial pack. I feel happy to be able to help in the research of this condition.

[ho11y]

I did one for Ninewells Hospital, Dundee, Scotland where they took 13 tubes of blood !! I also did the Cambridge University one for DNA, rather than a saliva sample, I got the nurse at my GP's to take blood and I sent that. These people at Cambridge, are a godsend, very, very helpful!

[jen23lilly]

Ive recently recieved a letter from cambridge I think it was, again my memory is not great recently.All I had to do was send a saliva sample off.

[SunnyXXOO]

I have not, but would like to be involved with Cannabis Trial or Stem Cell Transfusion Trial