Emory-CCF-Ciitizen Quality of Life Survey

Dear Valued Member of the Cholangiocarcinoma Foundation,

We are writing to request your participation in a research study. The study is being conducted through the Winship Cancer Institute at Emory University in collaboration with the Cholangiocarcinoma Foundation and Ciitizen. We are contacting you because you are involved with the Cholangiocarcinoma Foundation and we would like your help!

The goal of our research study is to better understand quality of life among patients with cholangiocarcinoma. We hope this will allow us to identify areas for improvement in patient care as it relates to physical, emotional, and psychological well-being. Thus, it is extremely important that we hear from you!

If you choose to take part in our research study, you will be asked to complete a questionnaire at three different timepoints: at study enrollment (now), 6 months from now, and 12 months from now. The questionnaire should take 10-15 minutes to complete. You will also be asked to share some information about you and your treatment. If you have already signed up with Ciitizen, we also request access to your healthcare information, which will allow us to draw meaningful connections between your ongoing clinical care and the answers you provide to the questionnaire. 

Please read the enclosed information leaflet carefully. If you do not wish to take part in the study, please disregard this email. However, if you are interested in taking part in the study, please click the link below to complete the first questionnaire. The information you provide is confidential and will be stored on a password-secured server. If you have any questions about the study or would like additional information, please contact me or Dr. Jessica Keilson directly.


Thank you for your help!