Re: International Cholangiocarcinoma Patient Registry

Just done mine for my dad. Was easy to do, even at this early hour of the day!

To all reading this, please help us if you can be completing the registry, it was be of great help to researchers worldwide.

Thank you.

Gavin

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

Hi Donna,

Yes you are so right about it only taking a small amount of time for someone to complete the registry, it didn't take me long at all and I completed it this morning before breakfast! Although I did have a couple of cups of tea whilst doing so! And of course, this will indeed give researchers worldwide so much information in such a short period of time.

Please everyone, this is so important and I can't stress the urgency of this. Normally it would take quite some time for researchers to gather information such as this and the more people who complete the registry the quicker they will be able to get this vital information and hopefully act on it.

Please all, can you take this time to complete the registry. The quicker we get the information the quicker it will be to get the answers. My thanks to you all and please, join us all with the registry!

Hugs to you all,

Gavin

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

Latest count:  31 participants within a 24 hour time span.

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

just completed for my husband and I hope many others will also do so!

What I did miss were questions about local recurrence, lymph node involvement (which isn't always present when diagnosed but sometimes appears later) and recurrence in form of distant metastases (also could be present at time of diagnosis or appear later).
Because for all of us (and especially medical personnel and scientists) it might be very interesting to see whether or how recurrence happened after different treatments which the patients might have had.
So if for example adjuvant chemotherapy after surgery shows to decrease the risk of the  development of distant metastases that would certainly give room for careful conclusions... so many questions each of us will have because of own very own personal experience... like I always wonder whether a different approach before surgery (or adjuvant therapy) might have prevented the cancer cell spreading to the rib along the drain etc.
If details like this would be included in the registry we'd even get more useful information out of it. Think it would help the scientists as well as us...

Re: International Cholangiocarcinoma Patient Registry

Excellent feedback, dear Patzel, thanks so much. Information such as this is very important, as it will help us make the necessary revisions for next year's updated version of the registry. 
Thanks again,
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 for completing the registry and for your feedback on it as well Suzanne. And thanks to Marion for an update on the numbers. Let's hope that we get more as the weekend progresses!

Hugs to you both,

Gavin

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.