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Session 2: Ethical Considerations in Neonatal and Rare Disease Clinical Trials



Introductory Remarks for Panel Discussions and Moderator
Dalia Feltman, MD, MA
OPT/OCMO/OC, FDA

Panel A: Weighing benefits and risks when evidence is limited

Panelists:

Alison Bateman-House PhD, MPH, MA
NYU Grossman School of Medicine

Robert Nelson, MD, PhD
Johnson and Johnson

Allyson Berent, DVM, DACVIM
The Foundation for Angelman Syndrome Therapeutics (FAST)

Elliott Mark Weiss, MD, MSME
Seattle Children’s Hospital

Matthew A. Rysavy, MD, PhD
McGovern Medical School at UTHealth Houston

Ashley O’Neil, CRNP
It’s a NICU World

Panel B: Study design considerations

Panelists:

Alison Bateman-House PhD, MPH, MA
NYU Grossman School of Medicine

Robert Nelson, MD, PhD
Johnson and Johnson

Lindsey Wahlstrom, MPH, CPH
Rona’s FUN LAB

Elliott Mark Weiss, MD, MSME
Seattle Children’s Hospital

Matthew A. Rysavy, MD, PhD
McGovern Medical School at UTHealth Houston

Jennifer Degl, MS
NICU Parent Network

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