Project Summary

Each year, the Cholangiocarcinoma Foundation Annual Conference unites stakeholders from around the world to find a cure and improve the quality of life for those affected by cholangiocarcinoma (CCA), a rare and lethal cancer of the bile ducts. The 2019 conference will be held January 28-February 2 in Salt Lake City, Utah.

The conference is transforming the cholangiocarcinoma landscape by offering unique patient-forward programs that promote international collaboration, accelerate research efforts, and provide education to all stakeholders, including physicians, scientists, academia, policy makers, regulators, industry, advocates, patients, and caregivers.

Conference programming will be 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
  • To build a patient-centered outcomes research (PCOR) community through an international collective of patients, clinicians, researchers, and other healthcare stakeholders who will advance the tenants of PCOR.

The award will provide support for 30 “PCOR Scholars” to attend and participant in all facets of the conference. Funds will cover registration, air and ground transportation, accommodations, and meals. Other expenses include personnel, venue rental for the Patient Lounge and breakout sessions, and patient supplies. The PCOR Patient Steering Committee works year-round to ensure inclusion of the patient voice in all aspects of conference planning, implementation, and evaluation.

Outcomes will include improving each patient’s ability to make crucial healthcare decisions about which treatment approaches would be best, given their own preferences and circumstances, and facilitate shared decision making with providers to improve quality of life and achieve extended survival.

Project Information

Donna Mayer, BA
Cholangiocarcinoma Foundation
$50,000

Key Dates

October 2019
2018
2019

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Last updated: April 8, 2024