Amplifying Patient Voice: Success Story
March 27, 2026
Showcasing Outstanding Patient Partnership in the HYPERION CCA Study
We are delighted to spotlight the partnership between HYPERION CCA research team, and the Cholangiocarcinoma Foundation (CCF). The HYPERION CCA study is led by Dr. Eugene Koay at The University of Texas MD Anderson Cancer Center, one of our grantees.
This research team integrates patient partners as true collaborators, shaping trial design, implementation, and the dissemination of results to ensure that research reflects what matters most to patients.
Addressing a Top Patient-Identified Research Priority
According to Wendy Selig, RTFCCR Board Member, “[W]hile Cholangiocarcinoma is a rare cancer, patients and families struggling with this disease are fortunate to have an active, globally focused patient advocacy foundation that provides leadership for the field as it advances better clinical options. The Cholangiocarcinoma Foundation (CCF) convenes patients, caregivers, researchers, clinicians, industry, and partner organizations to identify unmet needs in the field and direction for meeting those needs. CCF has its finger on the pulse of patient priorities and can shape research projects to best respond to those insights.”
At the 12th CCF Annual Conference in 2025, patients, caregivers, and clinicians reached a near-unanimous consensus on the need for randomized trials evaluating loco-regional therapies with endpoints such as quality of life, liver function, and overall survival.
The HYPERION CCA study directly responds to that priority, representing a major step forward for the cholangiocarcinoma community.
A Model of Deep, Sustained Patient Engagement
The HYPERION CCA study is a Phase 2 trial evaluating systemic therapy with or without liver-directed radiation therapy for patients with advanced intrahepatic cholangiocarcinoma (NCT06858735).
From the earliest concept discussions, CCF played a central role in informing the study’s direction. Their contributions included:
- Advising on clinically meaningful endpoints
- Co-developing a feasible and patient-centered study design
- Integrating quality of life measures
- Reviewing all patient-facing materials
- Serving on the Steering Committee through both lived experience and clinical expertise
This long-standing partnership—shaped through national and international meetings, CCF conferences, and investigator–patient dialogues—helped define the study’s core scientific question.
How Patient Input Strengthened the Study
Patient insights directly improved the trial in several important ways:
- 2:1 randomization was adopted to increase the acceptability of the radiation arm.
- Overall survival was confirmed as the primary endpoint, aligning with patient priorities.
- The FACT-Hep quality-of-life tool was selected based on patient preference.
- The translational sampling schedule was adjusted to reduce burden.
Together, these changes enhanced the study’s feasibility, relevance, and scientific robustness.
Innovative Communication and Outreach
To support awareness and future recruitment, CCF has leveraged its broad communication network, including:
- Bimonthly, patient-focused webinars
- Virtual meetings and patient ambassador engagement
- Regional and international symposia
- Website and social media channels
- The upcoming CCF patient app, CholangioPath (launching May 2026), will highlight active studies and provide push notifications on emerging CCA news, new resources, support groups, and meetings
These creative approaches help ensure that patients, caregivers, and clinicians remain informed and connected.
Looking Ahead
While recruitment is still in early stages, the study is now publicly listed on clinicaltrials.gov, with ongoing monitoring and support from CCF and the investigator team. A “trial in progress” abstract will be submitted to the upcoming CCF Annual Meeting to raise further awareness.
Once results are available, dissemination will include presentations at the CCF Annual Conference, updates on the Foundation’s website and newsletter, and dedicated communications across patient and clinical networks.
Celebrating Exemplary Partnership
We congratulate Dr. Eugene Koay, the UT MD Anderson team, and the Cholangiocarcinoma Foundation for demonstrating how meaningful patient involvement can elevate research quality and advance impactful cancer care solutions. Their collaboration stands as an inspiring example of patient-centered research in action.
Shaping the Field of Clinical Research
Rising Tide is honored to count on CCF’s partnership as we advance our work to assess the impact of patient involvement across the grants we fund. In the second half of 2026, we will launch a co‑creation initiative to identify ways to classify and cluster the diverse impacts of patient engagement—both within funded research projects and for people receiving treatment.