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Clinical trials and young adults with inflammatory bowel disease

Sneha Dave1,2, Sydney Reed1,2, Mara Shapiro1,2,3

  • 1Generation Patient, United States.

Health Care Transitions
|April 16, 2025
PubMed

Insights

Young adults with inflammatory bowel disease (IBD) are underrepresented in clinical trials. Enhancing their participation requires addressing research barriers and implementing age-specific strategies for better outcomes.

Area of Science:

  • Gastroenterology
  • Clinical Research
  • Patient Advocacy

Background:

  • Young adults (18-35 years) with IBD possess unique characteristics.
  • This demographic is significantly underrepresented in clinical trials.
  • Current research often fails to capture the specific needs of young adult IBD patients.

Purpose of the Study:

  • To synthesize insights from a roundtable discussion on young adult IBD patient representation in clinical trials.
  • To identify key themes and challenges related to this demographic in research.
  • To explore opportunities for improving young adult participation and outcomes in IBD research.

Main Methods:

  • A roundtable discussion facilitated by the Crohn's and Colitis Young Adults Network (CCYAN).
  • Involved young adult patients with IBD and diverse medical professionals (physicians, nurses, psychologists, trainees).
  • Qualitative synthesis of discussion themes.

Main Results:

  • Defined young adults as a distinct demographic requiring specific research considerations.
  • Highlighted barriers to clinical trial participation and post-trial responsibilities for young adults.
  • Identified opportunities in regulatory and legislative policy to boost representation.

Conclusions:

  • Young adults with IBD require tailored approaches in clinical research.
  • Addressing participation barriers and leveraging policy changes are crucial for better representation.
  • Disaggregating data by age is essential for improving outcomes in this population.

Keywords:
Adolescents in clinical trialsClinical trial diversityYoung adults in clinical trialsYoung adults with inflammatory bowel disease

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