We can start simple,we had 1600+ members; we can start with the current members who are caretaker or patients themselves or we can set a time frame(ie: only for patients who had cc in the past 5 years etc.).
If we can give funding to help research on cc,we can hire 2 college students major in statistic or med students for a summer or winter break job to go thru each entry and fill in the banks or itemize of the info we needed provided by your son(the epidemiologist).The reason for 2 students instead of one is for cross references.
Our members may just want to know each other better and may not need in details survey info.like the one I suggested a while ago for the purpose of research.
On the same note,if you can please let the board members in the phone conference know that my suggestions about the up date of the topics changing in the forum of research on this site to see what they think.
If I may suggest,if we can
1. Expand "chemotherapy" on that experience forum ,put it first on the list as "Systemic treatment options "---chemo therapy ,molecularly Tagareted therapy,immunological therapy and others " to reflect the current progress of treatment plans available.
2.Move the Radiation to 2nd place on the forum to reflect the importance of it and change the entry to "Radiation Treatments and options" to reflect Radiation is a viable and important treatment option for CC.
3. Combine "resection and transplant"and change to"Surgery,Resection and Transplant Treatment options" into one entry and put it as #3 on the list because all use the surgical technique as the means to achieve their goal.
4. Change the "side effects" to "Adverse Reactions and Side Effects" to reflect other problems that is not related to medications only(ie: stents dislocation; problems caused by disease state. eg. ascites and infections etc.)
4. Change the "alternative treatment" to "complementary and alternative treatment-CAM" to reflect the up to-date usage for discussion of the topic.
5.Create a new entry like" Bits and Pieces of Information "to share and update about cholangiocarcinoma." --- a few lines of information( small entries) that we can enter and share without long entry after research.
Thanks for listening.
Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.