pbc study anyone interested

[cazz22]

hi just been asked to take part in a pbc study to se if genetic factors may be important.if anyone else is interested contact([e-mail]) or phone Cambridge 01223769088.apparently its only a questionaire and saliva test.

[sjr1]

I was asked to do this, filled the form in , but not herd anything back that was last september

[June9961]

Yes I did the saliva test as did my sister. Havent heard anything either.

[mumofthree]

Hi sjr1/June9961,

I too have done this Genetics Study. From my understanding you provided your Saliva sample and filled out the questionnaire. Then information obtained from everyone who takes part is collated and studied to try and find out genetic links/possible causes of PBC.

Personally I did not expect to hear anything from them this early in the day as research can take years. Also if I remember correctly there was some reference in the paperwork which I interpreted as meaning...correctly or incorrectly.... that you would not be contacted as they could not comment on individual cases or words to that effect.

There is not a lot known of PBC and what causes it so research must be welcomed and the more people that take part the better for us all in the long run.

I am sure we will eventually hear directly or indirectly the results of this genetic study and learn if they were successful in finding any links.

[ho11y]

I did this as well, but decided to have blood taken by the nurse, I also filled the questionnaire in. I spoke directly to Cambridge University on a number of occasions, such helpful people, who have given me a vast amount of information regarding PBC, a lot more than the GP, or Consultant. I think it's worth doing, the more data they receive the more insights they can make into this illness.

[wendyh]

also done this last year and received a second questionaire which i also filled in and sent off

[Hidden]

I too have done this, provided a sample and completed questionnaire, later received a second questionnaire, which I sent back, the PBC foundation send out the Bear Facts magazine which usually gives an update on the research.

[jaws58]

Hi Said I would join but only had letter so farJ