Topic: Research Papers for Registry

I was so excited...my packet came yesterday with all the paperwork to sign up for the Cholangiocarcinoma Registry Research Project with Mayo Clinic.  I briefly went through them before bed.  I was surprised at the actual brevity of the questionnaire.  And...I could see that I would LOVE to put explanatory notes along side the answer boxes, as I didn't see where it would really give a clear picture.  There wasn't a box that really fit my answers.  smile  (Yes, I HAVE to be different).  But, will do my best to fill it out and mail it in asap.  I may email the researcher and see if it is okay though to write in a couple things along side some answers, just in case. 

We're going to do the blood tests when I go up to Mayo for my next appointment instead of doing them here locally. That was the researcher's suggestion.  Otherwise, the procedure for the blood tests done locally, is pretty simple. 

I was surprised to find that it mentioned more than one blood test over time, but frankly that doesn't bother me.  It also mentioned a "poo" collection test.  Again, that doesn't bother me, but was just surprised because I didn't remember seeing that before. 

If I understand correctly, they are in need of "healthy" volunteers also for control subjects....family members.  I'm going to try to get my husband, brother and son to join the project.  My mother is 87 and not in good shape...I think just physically she couldn't cope with the extra blood test, etc.  I will ask her what she thinks, but not press it.  I'm sure my husband, son and brother will do it "for me".  My husband actually is my 3rd cousin, so he qualifies as a relative on a couple levels.  (No hillbilly jokes please...we've heard them all....seriously, I usually tell people we're cousins just to get a rise out of people.  My grandparents on the same side were first cousins, and all of the off spring and grandchildren were at the very least, normal, and many talented and gifted.  At least we got lucky with "those" genes. )

I encourage anyone who hasn't asked for a packet yet, to do so.  As soon as I signed up to get one, I felt that I was doing something proactive....to help everyone, not just me.  Get out there and make your CC information count!!  We all need to do this for each other. 

Iowa Girl
Julie t.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Research Papers for Registry

Julie....thanks for sharing this information with us. Your feedback is very important  I will make sure to pass on the information.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER