Case Study: Cholangiocarcinoma Foundation achieves rapid, HIPAA-compliant patient insights to shape oncology research with QuestionPro

The Cholangiocarcinoma Foundation - Customer Case Study

The Cholangiocarcinoma Foundation (CCF) is a nonprofit that supports patients and researchers confronting cholangiocarcinoma, a rare and aggressive bile duct cancer. Facing a tight timeline ahead of the ASCO conference, CCF needed to rapidly collect sensitive, actionable patient insights about barriers to participating in dose-finding oncology trials (DFOTs) amid challenges of speed, privacy compliance, and recruiting a rare patient population.

CCF used QuestionPro Research Edition to deploy a mobile-optimized, HIPAA- and GDPR-compliant survey with advanced branching, automated reminders, and real-time analytics, launching a tailored study in three weeks. The effort yielded nearly 300 responses (over 85% on mobile) and a ~90% completion rate among starters, revealing that 80% of respondents faced logistical and financial barriers but many would join trials if designs were more flexible—insights that informed a peer-reviewed manuscript and shaped research and policy discussions at ASCO.

The Cholangiocarcinoma Foundation

Amy Medley

Senior Director of Operations