Project Summary

Each year, the Cholangiocarcinoma Foundation Conference unites patients, caregivers, advocates, physicians, researchers, nurses, academia, industry, policy makers, payers, regulators, and other healthcare stakeholders from around the world for a common cause: to find a cure and improve the quality of life for those affected by cholangiocarcinoma (CCA). As a rare and lethal disease, CCA lacks attention and resources. Patient mortality rates are extremely high as less than 5 percent of patients diagnosed with advanced CCA live beyond five years.

Paramount to that effort, the Conference in Salt Lake City, Utah, January 30-Feb. 3, 2018, will host a multidisciplinary audience of 350-plus attendees. Members of the medical and scientific communities will present a diversity of perspectives focused on evidence-based opinion and summarize emerging developments in basic, translational, and clinical research. A global community of experts will review symptoms, incidence, and prevalence in high-risk populations (prevention); examine epidemiological and pathological features of the heterogeneous group of three anatomically distinct cancers (diagnosis); and review advances in oncology research that are likely to be clinically relevant (treatment and cure).

Conference programming has been developed with the following objectives: to foster sustainable participation of the medical, research, and patient communities in the field of cholangiocarcinoma; to increase the knowledge and understanding of attendees about key issues central to the prevention, diagnosis, treatment, and cure for cholangiocarcinoma; to encourage, strengthen, and support collaborations in the field of cholangiocarcinoma research; and to build a PCOR community through an international collective of patients, clinicians, researchers, and other healthcare stakeholders who will advance the tenets of patient-centered outcomes research.

This award will provide support for 30 PCORI Scholars to attend and participant in all facets of the conference. Funds will cover registration, accommodations, roundtrip, programmatic travel including economy class airfare, ground transportation, and meals. Other expenses will include personnel, venue rental for the patient lounge and breakout sessions, and patient supplies. To ensure patient-centeredness and adequate representation of patients in all aspects of the planning for the 2018 conference, a patient steering committee (PSC) has been convened. Results from the preconference survey they design and administer to the global patient community will be utilized to determine patient preference for session format, content, agenda, speakers, networking events, evaluations, and more.

Renewed support from PCORI will make it possible for CCF to expand programming that will introduce the concept of patient-centered outcomes research. The goal will be to build a PCOR community through an international collective of patients, clinicians, researchers, and other healthcare stakeholders. The conference will provide a forum to engage patients in the entire research process, from study design and implementation of results to dissemination. Bringing patients, clinicians, researchers, and other stakeholders together in new partnerships and training them in the conduct of PCOR is essential to making engagement meaningful and effective.

Project Information

Donna Mayer, BA
Cholangiocarcinoma Foundation
$49,930

Key Dates

11 months
2017

Tags

Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022