Clinical trials and young adults with inflammatory bowel disease

Sneha Dave; Sydney Reed; Mara Shapiro; Yeabsira Taye; Isabela Hernandez; Navin Kariyawasam; Ildiko Mehes; Manasi Agrawal; Miguel Regueiro; Adam Faye; Jeremy Adler

doi:10.1016/j.hctj.2025.100100

Health Care Transitions (Jan 2025)

Clinical trials and young adults with inflammatory bowel disease

Sneha Dave,
Sydney Reed,
Mara Shapiro,
Yeabsira Taye,
Isabela Hernandez,
Navin Kariyawasam,
Ildiko Mehes,
Manasi Agrawal,
Miguel Regueiro,
Adam Faye,
Jeremy Adler

Affiliations

Sneha Dave: Generation Patient, United States; Crohn’s and Colitis Young Adults Network, United States; Corresponding author at: Generation Patient, United States
Sydney Reed: Generation Patient, United States; Crohn’s and Colitis Young Adults Network, United States
Mara Shapiro: Generation Patient, United States; Crohn’s and Colitis Young Adults Network, United States; Department of Public Health Sciences at the University of Virginia, United States
Yeabsira Taye: Crohn’s and Colitis Young Adults Network, United States
Isabela Hernandez: Generation Patient, United States; Crohn’s and Colitis Young Adults Network, United States; University of Miami Leonard M. Miller School of Medicine, United States
Navin Kariyawasam: Crohn’s and Colitis Young Adults Network, United States; University of Toronto Faculty of Medicine, Canada; Boston Children's Hospital, United States
Ildiko Mehes: Improve Care Now, United States; Sapphire Therapeutics, United States
Manasi Agrawal: Icahn School of The Susan and Leonard Feinstein IBD Center at Mount Sinai, United States
Miguel Regueiro: Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, United States
Adam Faye: Crohn’s and Colitis Young Adults Network, United States; Inflammatory Bowel Disease Center at NYU Langone Health, United States
Jeremy Adler: C.S. Mott Children’s Hospital, United States; University of Michigan Department of Pediatrics, United States

DOI: https://doi.org/10.1016/j.hctj.2025.100100
Journal volume & issue: Vol. 3
p. 100100

Abstract

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Young adults (approximately 18–35 years) with inflammatory bowel disease (IBD) represent a distinct demographic with unique developmental and physiological characteristics, yet they are underrepresented in clinical trials. This commentary synthesizes insights from a roundtable discussion facilitated by the Crohn's and Colitis Young Adults Network (CCYAN) between young adult patients with IBD and medical professionals, including physicians, nurses, psychologists, and trainees/medical students. Themes include defining young adults as a distinct demographic in research, improving outcomes for young adults with IBD through age-specific data disaggregation, barriers for participation and post-trial responsibilities, as well as regulatory and legislative policy opportunities to enhance young adult representation in clinical trials.

Published in Health Care Transitions

ISSN: 2949-9232 (Online)
Publisher: Elsevier
Country of publisher: United States
LCC subjects: Medicine
Website: https://www.sciencedirect.com/journal/health-care-transitions

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Abstract

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