The Cholangiocarcinoma Foundation Advanced & Secure Research

In preparation for the ASCO oncology conference, CCF faced a critical challenge: rapidly collecting actionable insights from a diverse patient population about barriers to participating in dose-finding oncology trials (DFOTs). These trials are essential for developing safe, effective cancer therapies, but recruiting patients with rare conditions is uniquely complex.

The main challenges included:

1. Speed: Only a few weeks to design, deploy, and analyze the survey.
2. Sensitivity: Addressing deeply personal and logistical barriers faced by patients with rare cancers.
3. Data Security: Ensuring compliance with HIPAA and other privacy regulations due to the sensitive nature of patient health information.

Advanced survey logic & personalization

Over 30 advanced branching and skip logic rules let CCF customize the survey experience for each respondent, ensuring relevance and sensitivity. Personalized flows aligned with patients’ unique journeys, increasing engagement and improving data quality.

Robust data security

Full HIPAA and GDPR compliance, ISO 27001:2022 certification, and enterprise-grade security protocols protected sensitive patient data and maintained trust.

Mobile-optimized, accessible surveys

Cross-platform functionality allowed over 85% of respondents to complete the survey on mobile devices, making participation easy and accessible anywhere.

Real-time analytics & actionable insights

Live dashboards and AI-powered analytics enabled CCF to monitor participation, track completion rates, and surface insights instantly, accelerating research and decision-making.

Automated Engagement Tools

Built-in reminders and follow-up tools boosted response rates to nearly 90% among those who started the survey, maximizing data collection within tight timelines.

Within just three weeks, CCF designed and launched a sophisticated survey with personalized flows, resonating with patients’ unique journeys. Broad digital outreach generated nearly 300 responses, which is impressive given the rarity of the disease.

The survey uncovered critical barriers:

1. 80% of respondents reported logistical and financial challenges, such as travel time, housing costs, and restrictive washout periods.
2. Many patients expressed willingness to participate in trials if they were designed with greater flexibility and patient-centric considerations.

These insights informed a peer-reviewed manuscript and directly influenced research and policy discussions at ASCO.