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DIA 2021 Global Annual Meeting
Pediatric Engagement in Research: Young People Have a Voice
Elisa Koppelman, MPH
- Program Manager
- MRCT Center, United States
The importance of pediatric patient and parent (or guardian) engagement and input in all aspects of clinical research and product development is increasingly recognized, although not consistently practiced, particularly in pediatric research. This forum will discuss why it is critical to get decision makers (industry sponsors, IRBs/ethics committees, regulatory agencies, patient community) to buy in to the concept; who is involved in the data collection via exploration of the qualitative methodologies that explicitly and systemically gather data to build "representativeness" into the process; include exploration of what constitutes sufficiency of evidence; and how to gather data creatively and effectively by sharing practical considerations for patient and parent or guardian and sponsor interaction.
Learning Objective : Discuss the ways IRBs, ethics committees and regulators currently view/utilize patient/family input; Describe approaches for enhanced incorporation of the patient/family perspective into the lifecycle of product development.
Albert John Allen, MD, PhD, MSc
- Senior Medical Fellow, Pediatric Capabilities
- Eli Lilly and Company, United States
Gianna McMillan, PhD
- Bioethics Institute, Associate Director
- Loyola Marymount University, United States
Nathalie Bere, MPH
- Patient Engagement
- European Medicines Agency, Netherlands
Jennifer Denise Preston
- Senior Patient and Public Involvement Manager, Dept of Women & Children's Health
- University of Liverpool, United Kingdom