The Cholangiocarcinoma Foundation has expanded its annual conference to include programming that answers questions that are important to patients and allows them to make crucial healthcare decisions about which preventive, diagnostic, or treatment approaches would be best, given their own preferences and circumstances. A diverse assembly of patients, caregivers, and representatives from the clinical and research communities will address topics such as integrative medicine, palliative care, informed decision-making based on benefit versus risk, and patient involvement in all aspects of the research process including study development, trial participation, and delivery of results.
The projected output from this project is an annual conference to provide a forum to promote collaboration, improve understanding, advance research efforts, and provide education among the entire cholangiocarcinoma community. The conference allows patients and caregivers to explore benefits, approaches and opportunities for patient partnerships in cholangiocarcinoma therapy development, engage in open dialogue about challenges and concerns in the field of cholangiocarcinoma research; and foster access to–and opportunities for collaboration with–the medical, scientific, and regulatory communities who otherwise might not have a chance to hear the patient voice.
Project collaborators include the University of Utah Huntsman Cancer Institute.