Patient partner involvement in paediatric clinical research

Описание: This webinar features Prof. Amos Burke, Director of Cancer Research UK Clinical Trials Unit, Professor of Pediatric Oncology at the University of Birmingham, and Principal Investigator of the Glo-BNHL trial, and Ms. Nicole Scobie, chair of ACCELERATE, a multi-stakeholder platform and patient partner of the paediatric Glo-BNHL trial. You can watch the entire conversation or use the timestamps below to find specific topics of interest.  

Introduction: 0:00 - 1:13
Meet moderator Paola Atzei, PhD, senior scientific program manager at the Rising Tide Foundation for Clinical Cancer Research, as she introduces the webinar and explains its purpose: fostering collaboration between patient advocates and researchers in clinical cancer research. The webinar aims to educate both parties on co-creating clinical trials, provide examples of successful partnerships, and discuss metrics of success. 

Panelist Introductions: 1:13 - 2:38
Ms. Nicole Scobie and Prof. Amos Burke introduced themselves. Nicole is a parent of a childhood cancer survivor and a patient advocate, while Amos is a childhood cancer doctor and the chief investigator for the Glo-BNHL trial. 

Glo-BNHL Trial Overview: 2:38 - 5:39 
Amos provided an overview of the Glo-BNHL trial, explaining its focus on non-Hodgkin's lymphoma in children. The trial investigates multiple treatments in three different arms, each targeting cancer cells in unique ways. 

Patient Advocate Involvement: 5:39 - 8:54
Nicole discussed her involvement in the Glo-BNHL trial from its inception. She emphasized the importance of international collaboration and the role of patient advocates in developing the trial. 

Impact of Patient Advocacy: 8:54 - 11:01
Amos highlighted the significant impact of patient advocacy on the trial design, particularly in moving away from randomization. He emphasized that the patient advocate voice was crucial in regulatory and ethical discussions. 

Practical Contributions of Advocates: 11:01 - 22:33
Nicole and Amos discussed the various ways patient advocates contribute to clinical trials, from protocol review to dissemination of results. They emphasized the importance of patient advocates in every stage of the trial. 

Challenges and Misconceptions: 22:33- 28:30
Nicole and Amos addressed the challenges and misconceptions in involving patient advocates in clinical trials. They highlighted the need for preparation and the importance of patient advocates asking questions. 

Future of Pediatric Trials: 28:30 - 30:59
Amos and Nicole expressed their hope that the practices developed in the Glo-BNHL trial become standard in pediatric clinical trials. They emphasized the importance of equal partnership between clinicians and patient advocates.