Topic: International Cholangiocarcinoma Patient Registry

The International Cholangiocarcinoma Patient Registry officially opened to the public at Noon (EDT) today with the challenge of registering 100 participants within the first 60 hours. If the goal is met, the Foundation will receive a $500 donation.

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 Cholangiocarcinoma Patient Registry

Thanks for that Marion. Rick put it on the FB page as well so let's hope we get there.

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.

3 (edited by Lainy Fri, 27 Jun 2014 11:06:26)

Re: International Cholangiocarcinoma Patient Registry

Gavin, have you tried to get in the site? Just a blank page comes up for me.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: International Cholangiocarcinoma Patient Registry

Lainy,   Were you able to get it?   I just tried it and it comes up for me.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: International Cholangiocarcinoma Patient Registry

Darla, I have rebooted several times and I just keep getting ........THis Page Cannot Be Displayed.....forbidden  403

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: International Cholangiocarcinoma Patient Registry

Lainy,  I will forward to Rick.

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 Cholangiocarcinoma Patient Registry

Lainy....every link works from our end; have you tried:
registry.cholangiocarcinoma.org

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 Cholangiocarcinoma Patient Registry

It seems to be working for me over here Lainy. Am sure that Rick will get it fixed though!

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.

9 (edited by Lainy Fri, 27 Jun 2014 20:07:16)

Re: International Cholangiocarcinoma Patient Registry

Marion, I just tried that, thanks, but get the same results. Oh well. As long as the members are getting it that is what is important. Thanks anyway.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: International Cholangiocarcinoma Patient Registry

Can you get this link to work Lainy?

https://cholangiocarcinoma.patientcrossroads.org/

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 Cholangiocarcinoma Patient Registry

This page follows on from the above link as well.

https://cholangiocarcinoma.patientcross … mp;lang=en

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 Cholangiocarcinoma Patient Registry

Become an active contributor in the mission to find a cure for Cholangiocarcinoma!

For a small investment of time, you can provide a wealth of knowledge to researchers worldwide to help them better understand cholangiocarcinoma and identify patients to participate in clinical trials and research surveys.  The more data the registry collects, the more efficiently researchers will be able to focus their endeavors.

Please join the ICPR at http://registry.cholangiocarcinoma.org

Re: International Cholangiocarcinoma Patient Registry

Lainy....anyone with first hand knowledge of this disease should enter the data - not only patients
Let us know whether you need additional help with navigating the registry.
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 Cholangiocarcinoma Patient Registry

Lainy,

Another thing you could try is clearing your browser cache.  On my Mac that means Reset Safari/Clear History.  Rick might have already suggested this and/or could tell you how to do it on a PC.

More info from the Registry web page:

Who can participate?

Any person who has been diagnosed with Cholangiocarcinoma (current patient or survivor)

A family member (spouse, child, or sibling) who has permission to enter health information about a person who has been diagnosed with Cholangiocarcinoma (including patients who have passed away)

Andrea, Jason's wife  smile

Re: International Cholangiocarcinoma Patient Registry

Dear Andrea, thanks so much. In the meantime I got an email from our Rick and I can get in that way. Weird but will also take your advise and thanks. Hope you are doing well!!!!!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: International Cholangiocarcinoma Patient Registry

Marion and Rick.....everyone involved in the Registration....JOB WELL DONE    I don't think a beat was skipped and very easy to read and understand,  BTW   Thanks for keeping me busy with this Registration this afternoon. Lets hope we get more people than we ever dreamed of!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: International Cholangiocarcinoma Patient Registry

Lainy,  Glad you got that sorted out and were able to get in.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: International Cholangiocarcinoma Patient Registry

Nice feedback, Lainy.  I will make sure to pass it on to Linda, Barbara, Stacie, Donna, and Andrea.
I too have entered the data.  Unfortunately, it took little time. My husband was diagnosed and treated when fewer options were available.  Granted, I was familiar with the questions as well.

Hoping and wishing for many more to enter their data in the registry.

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 Cholangiocarcinoma Patient Registry

Marion, I was thinking about Teddy as well when I read the survey. What little choices we had just 8 years ago! No doubt about it we still have a way to go but we are headed in the right forward directions. You know I get fuz brain now and then from all the Meds but this was eazy peazy to fill out. I am just so proud and honored to be connected with this ORG. and the people involved!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: International Cholangiocarcinoma Patient Registry

Wasn't sure if this applied to me and others.  Not quite understanding if caretakers to those who have passed are included in this survey.   Will gladly participate if that is the case.   So would my information be relevant  to this survey?

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: International Cholangiocarcinoma Patient Registry

Darla....we ask for participation from:

"Any person who has been diagnosed with Cholangiocarcinoma (current patient or survivor)"

Or, as it is in our case and others having lost a relative to this cancer:

"A family member (spouse, child, or sibling) who has permission to enter health information about a person who has been diagnosed with Cholangiocarcinoma (including patients who have passed away")

So, yes, we would love your input of the data.

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 Cholangiocarcinoma Patient Registry

Thanks Marion.  Done!  smile

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: International Cholangiocarcinoma Patient Registry

Thanks, Darla.

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 Cholangiocarcinoma Patient Registry

I so want to see the update on where we are for the 100 people registered. i was so sure we would make it the first day.

I am glad we have it up and going. Made me go look for the one for thyroid cancer for my son and find it....I am going to have him register when he comes home next weekend from college. It's so important for people to do this for any type of cancer.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: International Cholangiocarcinoma Patient Registry

Kris....Jason informed me that we had a 18 new registrants.   CCF  conducted a pre-registry prior to  today hence, I believe that the numbers you see are a bit skewed.  As of now, we have 47 hours to go in order to receive the $500 donation. 
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