International Cholangiocarcinoma Patient Registry
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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
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,
Marionjust 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…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
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
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,
MarionI 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
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,
MarionWasn’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?
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!
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
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