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

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

  • By

  • Juliet Alepere

  • Susan Akullo

  • Pamela Okwir Apio

  • Brenda Atim

  • Andrea Beaton

  • Anneke Grobler

  • Samalie Kitooleko

  • Haddy Nalubwama

  • Emma Ndagire

  • Emmy Okello

  • Isaac Otim Omara

  • Jafes Pulle

  • Joselyn Rwebembera

  • Craig Sable

  • Amy Scheel

  • Alison Spaziani

  • Andrew Steer

  • Rachel Sarnacki

  • July 13, 2026

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Designing and Implementing Community-Informed Trials to Enhance Recruitment

Overview

The RHD Research Collaborative in Uganda developed a community-centered framework for conducting trials in low-income areas, addressing significant barriers to recruitment and retention.

Background

Conducting clinical trials in low- and middle-income countries presents unique challenges, including cultural barriers, limited infrastructure, and low disease awareness. Rheumatic heart disease (RHD) is particularly problematic due to its asymptomatic nature and the stigma surrounding pediatric heart conditions.

Data Highlights

No specific numerical data provided in the article.

Key Findings

  • The RHD Research Collaborative in Uganda (RRCU) established a community-informed approach to trial design.
  • Community engagement studios and a Community Advisory Board were utilized for ongoing consultation.
  • High rates of consent and retention were achieved in the GOAL-family of studies.
  • Secondary antibiotic prophylaxis adherence was significantly improved through community-centered strategies.
  • The GOAL trial demonstrated that prophylaxis can modify early RHD trajectories detected through community screening.

Clinical Implications

Engaging communities in the design and implementation of clinical trials can enhance participant recruitment and retention, particularly in low-resource settings. This model may serve as a template for future research initiatives targeting similar populations.

Conclusion

The community-informed approach developed by RRCU highlights the importance of integrating community values into research.

Related Resources & Content

  1. Drug Safety, 2023 -- Factors Influencing the Adoption of the Med Safety Mobile Application for Reporting Adverse Drug Reactions Among Healthcare Professionals in Uganda: A Qualitative Analysis
  2. Journal of Medical Internet Research (JMIR), 2026 -- Impact of Financial Incentives on Electronic Health Record–Driven Recruitment of Underrepresented Communities in Research: Randomized Controlled Trial
  3. JAMA Network Open, 2026 -- Messaging Modality and Content for Recruitment of Research Participants: A Randomized Clinical Trial
  4. Journal of Medical Internet Research (JMIR), 2026 -- Keeping Clinical Trials on an Inclusive Track
  5. Summary of recommendations - WHO guideline on the prevention and diagnosis of rheumatic fever and rheumatic heart disease - NCBI Bookshelf
  6. Antibiotics keep rheumatic heart disease at bay | Nature Reviews Rheumatology
  7. Enhanced support for adherence to rheumatic heart disease prophylaxis for children in the public health system in Uganda (CAMPS): a pragmatic randomised trial - ScienceDirect
  8. Summary of recommendations - WHO guideline on the prevention and diagnosis of rheumatic fever and rheumatic heart disease - NCBI Bookshelf
  9. Antibiotics keep rheumatic heart disease at bay | Nature Reviews Rheumatology
  10. Enhanced support for adherence to rheumatic heart disease prophylaxis for children in the public health system in Uganda (CAMPS): a pragmatic randomised trial - ScienceDirect

Original Source(s)

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

  • by Juliet Alepere, Susan Akullo, Pamela Okwir Apio, Brenda Atim, Andrea Beaton, Anneke Grobler, Samalie Kitooleko, Haddy Nalubwama, Emma Ndagire, Emmy Okello, Isaac Otim Omara, Jafes Pulle, Joselyn Rwebembera, Craig Sable, Amy Scheel, Alison Spaziani, Andrew Steer, Rachel Sarnacki

  • July 13, 2026

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