Community-informed trial design and implementation to optimize recruitment and retention in low-income settings: lessons from rheumatic heart disease trials in Uganda

Résumé

Research teams undertaking randomized clinical trials in low-and middle-income countries frequently encounter significant challenges, including limited infrastructure, cultural barriers to trust, and limited resources. Rheumatic heart disease (RHD) trials can be especially difficult because early stages of RHD often show no symptoms, there is low disease awareness among healthcare workers and the public, pediatric heart disease is often stigmatized, and disease management requires burdensome secondary antibiotic prophylaxis. To address these challenges, the RHD Research Collaborative in Uganda (RRCU) partnered with community members to establish a community-centered framework for trial design and implementation that incorporates group-based consent, frequent and personalized communication, and convenient, family-friendly participation structures. These components have been successfully adapted and applied across a series of RRCU studies, contributing to exceptionally high rates of consent, retention, and prophylaxis adherence. The RRCU's community-informed approach to trial design and implementation challenges assumptions about research feasibility in low-resource settings and demonstrates that high-quality, ethical pediatric research can be successfully conducted by engaging communities and integrating their values into all aspects of study design and execution.

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