Topic: International Cholangiocarcioma Patient Registry - ready for launch

within 1 or 2 days.
Please be ready to participate.

http://www.prweb.com/releases/2014/04/prweb11735117.htm

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

Re: International Cholangiocarcioma Patient Registry - ready for launch

Excellent!!! Thanks for letting us know Marion.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: International Cholangiocarcioma Patient Registry - ready for launch

Hi Marion and Gavin,

For the past few months, we've been ignoring that Mom has this disease and enjoying life.  However, Onc appointment Monday and I was hoping you could confirm- the request for information on the homepage (Mayo?) and patient registry-  are they two different initiatives or if she does the first will her info be included in the registry? 

I also will be questioning her doctor as to why Univ of MD is not listed as one of the major cancer centers.  They have the multi-disciplinary tumor board and one of my mother's doctors (Dr. Moeslein) has been mentioned by Percy as a source for second opinions.  I have read some of the experiences of non-responsive doctors on the posts, and so far, we are grateful for the support, compassion and responsiveness of her team of doctors.

Thank you!
Catherine

Re: International Cholangiocarcioma Patient Registry - ready for launch

Awesome news!!!!

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

Re: International Cholangiocarcioma Patient Registry - ready for launch

middlesister....so glad that you took time away from all the craziness this disease brings to our life.  So glad also that you have returned to this site because we value and depend information shared by our members.
To answer your question:
The Cholangiocarcinoma Foundation has sole proprietorship of the International Patient Registry.  It is not only meant to drive research, but also to aid patients and caregivers.  The de-identified information can be accessed  by the registrants at any time.  The registry has launched, but....and, here we go.....we are still trying to complete, re-arrange a few questions and answers received from a few pre-testers of the registry. 


The Mayo Research Study is supported by CCF.  This research study is a global initiate and will reveal a wealth of information to researchers focused on biliary cancer.
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

Re: International Cholangiocarcioma Patient Registry - ready for launch

So, the CCF Registry is for patients and the Mayo Research Study is for researchers?  When will the Registry be available for input?

BTW, I just filled out the Mayo forms.  Long winded and very general.  Written by a researcher and not by a patient.  EX:  The section on drinking tea was based on conventional tea without ackowledging herbal teas.  There was a question on weight change that seemed to assume you weight would either decrease or increase, not both, in six months.  No questions on alternative treatments such as chiropractic for back pains and acupuncture.  Maybe they will get info from the hospital treatments after the release is processed.

Will try Tuesday to get a blood ample to send to Mayo when I get my next chemo.  Have not had an overwhelming positive response of support from the hospital yet.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

7 (edited by marions Tue, 17 Jun 2014 13:33:28)

Re: International Cholangiocarcioma Patient Registry - ready for launch

Duke....the registry has opened to the first 500 pre-registrants.  Our 4 curators will work through this initial phase of applicants and then move on to the next phase. Everyone will be notified.
Re: the Mayo Study, we (CCF) do not have any influence on their protocol.
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