IKCC Report: Retention in Clinical Trials

Clinical trials are the key to advancing treatments for kidney cancer. The International Kidney Cancer Coalition (IKCC) launched a pilot program to consider the patient perspective in joining a clinical trial and factors that can influence clinical trial retention.

Research has shown that kidney cancer clinical trials have lower patient retention rates. This can be caused by a number of factors, including the burdens of travel, time away from home and work, cost, and side effects.

Supporting Patients in Trials

KidneyCAN participated in this project with the IKCC and is pleased to share the resulting paper.

Report Highlights include:

• The qualitative study identified eight domains that are important for clinical trial retention: knowledge, skills, social influences, environmental context and resources, beliefs about capabilities, reinforcements, beliefs about consequences and emotion
• The role patient organisations can play in supporting patients’ participation and duration in clinical trials by increasing awareness of trials and providing support
• The importance of including patient values in trial design, including information needs and addressing the burden of participating in trials

The report was developed through the contributions of IKCC Affiliate Organisations Action Kidney Cancer, formerly Kidney Cancer Support Network (UK), Kidney Cancer Canada (CA), and KidneyCAN (US). Josefine Björkqvist and Dr Rachel Giles (on behalf of the IKCC) planned and prepared the report. This project was funded with sponsorship from BMS, Exelixis, and Ipsen in full compliance with the IKCC Code of Conduct.

The IKCC Report

We at KidneyCAN believe that clinical trial participation is a crucial component to accelerate cures for kidney cancer. We encourage patients to talk to their doctors about clinical trials.

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