Beyond buzzwords: Diversity, equity and inclusion in rare disease clinical trials

The rarity of each individual rare disease introduces many unique challenges and complexity in clinical research including barriers to achieving representative trial populations and equitable access to trials. Focused effort and dedicated action are essential to create an equitable clinical research environment.

In this latest whitepaper, an interdisciplinary expert panel of research leaders and community advocates from BridgeBio, the Duke ALS Clinic, RARE-X, the Sumaira Foundation and ICON examine:

  • Barriers and effective strategies to mirroring the patient community make-up in rare disease clinical trials
  • Challenges that rare disease Patient Organisations are tackling to improve diversity, equity and inclusion (DE&I) in their own communities
  • Consequences of getting it ‘wrong’ in the clinical stage and beyond

Advancing DE&I in rare disease clinical research

This whitepaper is based on the cross-stakeholder panel discussion “Beyond buzzwords: DE&I in rare disease clinical research” hosted by ICON’s Center for Rare Diseases in 2022.