Introduction:
Increasing the diversity among clinical trial participants requires awareness, commitment and change at multiple levels, including clinical trial sites. There may be high levels of variability in what sites know, are doing and are willing to do to ensure clinical trial participation matches the disease population being studied.
Objectives: To gain perspective on how clinical trial sites think about the need to increase diversity in participation and what they are currently doing to increase diversity, access, and inclusion.
Methods:
Avidity surveyed their active clinical trial sites to better understand their current practices and their plans to increase diversity in muscular dystrophy clinical trials. Ninety-two investigators and research staff from 36 clinical trial sites were invited to complete a brief mixed methods survey with 43 individual responses. Questions focused on awareness of the problem, actions taken at the individual, clinic and institutional level, impact of actions, feasibility of specific activities and ideas for next steps for their own site. Descriptive analysis provided frequency distributions for closed-ended questions and a useful picture of where different sites stand on awareness and progress, as well as their perspectives on what is feasible. Thematic analysis revealed the kinds of actions sites have taken and where they see themselves making further change.
Conclusions:
Of the sites who responded to the survey, there is basic knowledge and awareness of the issues around lack of diversity in clinical trial participation and some action being taken. There seems to be a realistic willingness to do more, while also recognizing challenges and limitations. Developing education, tools, and resources for sites, and supporting their implementation of the most potentially impactful initiatives are next steps to explore in creating environments for increased diversity in clinical trial enrollment, bridging community and academic centers and increasing access to diagnosis and care.