Remember, there are two studies looking for info, both supported by the CCA Foundation.
1. International Hepatobiliary Neoplasia Biorepository is the one collecting samples and cannot be viewed by participants. The Mayo Clinic sends out a paper form to complete and requests blood and tissue samples. (Chances are that if you had tissue samples taken, there may be additional material stored at the hospital. This was true in my case. I sent a consent form for them to send material to Mayo.) This is the one that that has had one webinar (accessible from the link). To access the forms and webinar go the the Home page and click on the light bulb on the bottom.
2. International Cholangiocarcinoma Patient Registry forms are accessed from the Home page by clicking on the branch with leaves. The forms are completed online. Information can only be viewed by participants. No analyses or summary reports have been issued as yet, only the raw information.
Much of the requested information is the same so it is confusing which one is being referred to. In my mind I separate them as the Mayo Clinic study and the Patient Registry.
Marion - there is no hereditary factor here. Patients are unrelated.
Cazgirl - I lived in Oswego six winters and remember Heid's in Liverpool. Go there any time we get back Coney's are great but not enough to offset the winters and stay.
So much for the prelude.
We won't know the answers to your questions in this life. We have to have faith that there are answers There's a million cliches I could write, but it all comes down to faith. Norbert's, yours, your brother's, his wife, family members, and friends. Mine wavers from time to time. I think, I'm not ready yet. There's too much here to do and too much fun to have. Then I re-center and and focus on making whatever time I have left the best I can. It's almost easier for patients than care-givers.