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Tuesday, June 29 • 10:00am - 11:00am
#215 SL: Pediatric Engagement in Research: Young People Have a Voice

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Component Type: Forum
Level: Intermediate
CE: ACPE 1.00 Knowledge UAN: 0286-0000-21-564-L04-P; CME 1.00; IACET 1.00; RN 1.00

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 Objectives

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.


Elisa Koppelman, MPH


Albert John Allen, MD, PhD, MSc

Gianna McMillan, PhD

Nathalie Bere, MPH

Jennifer Denise Preston

avatar for Nathalie Bere

Nathalie Bere

Patient Engagement, European Medicines Agency, Netherlands
Nathalie Bere has a BSc in Psychology and a Master in Public Health. Nathalie has been working with European Medicines Agency (EMA)since 1998 and is currently responsible for its engagement with patients and consumers. Patients bring specific knowledge and expertise from their real-life... Read More →

Elisa Koppelman

Program Manager, MRCT Center, United States
Elisa Koppelman, MSW, LICSW, MPH, is a Program Manager at the MRCT Center of Brigham and Women’s Hospital and Harvard. She brings over ten years’ experience as a public health project director in an academic setting overseeing projects on a range of content issues with a particular... Read More →

Jennifer Preston

Senior Patient and Public Involvement Manager, Dept of Women & Children's Health, University of Liverpool, United Kingdom
Jenny currently has a full-time position at the University of Liverpool, based at the Institute in the Park at Alder Hey Children’s Hospital in Liverpool. Her role is to deliver a strategy for the involvement and engagement of children and young people and families in paediatric... Read More →
avatar for Gianna McMillan

Gianna McMillan

Bioethics Institute, Associate Director, Loyola Marymount University, United States
Dr. Gianna “Gigi” McMillan is the Associate Director for the Bioethics Institute at Loyola Marymount University in Los Angeles and teaches Research Ethics for their graduate program.. She has extensive experience as a Subject/Patient Advocate on local and national IRBs, was a... Read More →

Albert Allen

Senior Medical Fellow, Pediatric Capabilities, Eli Lilly and Company, United States
Albert J. Allen, M.D., Ph.D. is the senior medical fellow with responsibility for pediatric capabilities at Lilly Research Labs, Eli Lilly & Co., Indianapolis. A child psychiatrist and pharmacologist by training, A.J. joined Lilly in 2000 and spent 11 years in CNS global drug development... Read More →

Tuesday June 29, 2021 10:00am - 11:00am EDT
TBD Virtual Event Horsham, PA 19044
  05: Patient Engagement, Forum