International Cholangiocarcinoma Patient Registry
Patients, Researchers, Industry and Leading Medical Experts Join Forces to Accelerate Cholangiocarcinoma Research The first-ever patient registry for people with cholangiocarcinoma (bile duct cancer) was launched in June of this year by the Cholangiocarcinoma Foundation. The International Cholangiocarcinoma Patient Registry (ICPR) will help accelerate research into earlier diagnosis, better symptom and side-effect management, life-extending treatments, and new drug trials. The ICPR is a patient-centered database designed to collect relevant clinical and scientific information about people with cholangiocarcinoma. Patients, caregivers, and family members record and update personal disease characteristics in a private, secure online profile. Entries capture stage, treatments, test results, side effects, and treatment responses. All data is available in de-identified form, giving doctors, researchers, and patients themselves an unprecedented resource to determine the best approaches to care, according to each patient’s unique clinical history.
“Creating a registry of patient information is the single most valuable action a rare disease community can take. The registry provides critical knowledge which makes that disease easier to study, increasing the probability a treatment can be developed.” –David Meeker; President and CEO of Genzyme
Patients are encouraged to be active contributors in the mission to find a cure for cholangiocarcinoma. By opting-in, patients participate in their own healthcare by supplying researchers with the most up-to-date information possible. The more data the registry collects, the more efficiently researchers will be able to focus their endeavors.“For a small investment of time, patients can provide a wealth of knowledge to researchers” says Stacie Lindsey, CCF President and Founder. “The ICPR will empower patients and families to improve their own health outcomes and help make a difference that can be felt around the world.” REGISTER NOW
Young Investigator Award
Collaboration is essential to the success of any research program. The Cholangiocarcinoma Foundation chooses its grant recipients carefully to ensure they are willing build working relationships between researchers, institutions, and industry and share information, samples, and expertise with others in the field. With this vision in mind, the CCF and the Conquer Cancer Foundation of ASCO have once again collaborated to offer the Young Investigator Award (YIA) to raise awareness and trigger progress against cholangiocarcinoma, while providing critical early funding for physician-scientists at the beginning of their careers.
Here is a summary of the most recent grant award: Grant: Conquer Cancer Foundation of ASCO Young Investigator Award Recipient Name: Dr. Supriya Saha Recipient Institution: Massachusetts General Hospital Project Title: Targeting mutant IDH1 in a murine model of cholangiocarcinoma Grant Term: July 1, 2013 – June 30, 2014 Research Summary: All cancers have genetic mutations that cause cells to grow abnormally. Patients with cholangiocarcinoma have different combinations of such mutations that result in distinct subtypes of the disease and may have their own specific responses to therapy. It is therefore important to develop relevant model systems to understand how these different mutations affect the biology of cholangiocarcinoma and the response to treatment. The most common mutations in cholangiocarcinoma occur in two closely related genes called Isocitrate Dehydrogenase 1 and 2 (IDH1, IDH2). Our recent findings provide new insights into how IDH mutations cause cholangiocarcinoma. In particular, we found that mutant IDH prevents liver stem cells from responding to signals to stop growing and maturing into normal liver cells. We also developed genetically engineered mouse models that will enable us to rapidly test and develop new treatments for patients with IDH mutant cholangiocarcinoma.
“I am very grateful to the Cholangiocarcinoma Foundation for supporting Dr. Supriya Saha through the Young Investigator Award. Dr. Saha is an outstanding physician-scientist who has made a deep commitment to studying cholangiocarcinoma. He has developed an impressive series of model systems that are key to solving the biological and genetic processes that go awry during the progression of this cancer type. Dr. Saha has already made important insights into one of the major gene mutations found in cholangiocarcinoma patients. With these insights and model systems in hand, he is poised to make the important next step of defining ways to combat this terrible disease. The support from the Cholangiocarcinoma Foundation has been vital in helping him to create this impressive program.” – Dr. Nabeel Bardeesy, Massachusetts General Hospital Cancer Center
The Foundation will be supporting a Conquer Cancer YIA Award again in 2015. In addition, CCF will be expanding our research efforts with the creation of a “Research Fellowship in Cholangiocarcinoma”. The Foundation will provide direct funding for two awards of $50,000 each, for a one year period. Emphasis will be placed on innovative research that opens new pathways for diagnosis, drug discovery and ultimately a cure. Priority will be given to proposals that foster collaboration and open-access to the cholangiocarcinoma research community. Apply Now: APPLY FOR A RESEARCH FELLOWSHIP Click on the “CCF Research Fellowship” tab to Apply Now