CCF Announces Ciitizen as trusted partner; together pledge commitment to 1500 strong
On a day we light the world green, Ciitizen and the Cholangiocarcinoma Foundation (CCF) celebrate our partnership and double down on our commitment to find a cure and improve the quality of life for those affected with cholangiocarcinoma through innovative, patient-directed research.
CCF and Ciitizen announce today our commitment to support 1500 cholangiocarcinoma patients this year and to grow our community of engaged, research ready patients capable of together finding a cure and expanding options for those with cholangiocarcinoma. On the year CCF celebrates their 15th Anniversary, Ciitizen is proud to commit to becoming 1500 Strong alongside the remarkable cholangiocarcinoma community. We invite you to join us, and be a part of the largest cohort of cholangiocarcinoma patients taking an active and direct role in accelerating research. Did we mention it’s free, and always will be? We believe patients should never pay to access their rightful medical data.
Since launching our partnership in the summer of 2019, Ciitizen has supported over 300 cholangiocarcinoma patients in accessing their comprehensive medical data and using it to power innovative research and powerful tools like our Clinical Trial Options report. Together, this group of patients represents one of the richest cohorts of cholangiocarcinoma data in the world capable of accelerating patient-directed research towards finding a cure.
The Cholangiocarcinoma Foundation and Ciitizen’s partnership is rooted in a shared belief that patients have the ability to accelerate research by taking control of their health data. Just last month, CCF announced Ciitizen as one of its select Trusted Partners based on our shared passion for patient-directed research, complementary strengths, our long history of quality work, our relationship of trust and deeply aligned core values.
“The science has matured in CCA and as CCF has grown so have our partnerships. For CCF collaborating with partners is critical to our mission. Partnerships are at the heart of the way we work: our mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma. The relationships we build with our partners allow us to leverage resources and extend our reach in all aspects, and to widen the impact of our work. It is important to make sure we have shared values among other important factors in our partners. We are very grateful for the excellent work our partners have done for this community,” said Stacie Lindsey, CCF Founder and CEO.
In close collaboration with the CCF Research Network lead by Dr. Mitesh Borad, CCF and Ciitizen are working closely with the research community to spearhead natural history studies, observational research and integrated clinical trial solutions in cholangiocarcinoma — all made possible by the power of patients choosing to contribute to, and participate in research. For example, we’re working with leading cholangiocarcinoma oncologists like Dr. Shishir Maithel and Dr. Jessica Keilson from Emory’s Winship Cancer Institute to better understand treatment impacts to quality of life among cholangiocarcinoma patents.
Together, we’re making research accessible to all.
Accessible research in cholangiocarcinoma often starts with clinical trials. Since launching last fall, over 50 patients have accessed their personalized clinical trial options made possible by the rich and comprehensive clinical data securely stored in their Ciitizen profiles. All cholangiocarcinoma patients are eligible to request their free, comprehensive Clinical Trial Options Report when they join Ciitizen.
As we look forward together on World Cholangiocarcinoma Day, the future is bright. Bright green that is!
To help celebrate and kickoff 1500 Strong, all patients who join CCF and Ciitizen will receive a commemorative t-shirt celebrating the remarkable group of patients who will make us all 1500 Strong and radically accelerate our search for a cure and improved treatments.
By joining CCF and Ciitizen in the 1500 Strong campaign, you not only will be able to contribute to research, you will receive your comprehensive medical records “at your fingertips,” for you to share with whomever you choose – be it your family, caregivers or doctors. We hope you’ll help us become 1500 Strong and a part of the Cure.
-The Ciitizen and CCF Team