Community-informed trial design and implementation to optimize recruitment and retention in low-income settings: lessons from rheumatic heart disease trials in Uganda - Takeaways - 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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  • 1

    Rheumatic heart disease (RHD) affects over 54.8 million people and causes more than 370,000 deaths annually, particularly impacting children and young adults.

  • 2

    The RHD Research Collaborative in Uganda (RRCU) developed a community-centered framework for trial design that enhances recruitment and retention in low-income areas.

  • 3

    RRCU's approach includes group-based consent, personalized communication, and family-friendly participation structures, leading to high consent and retention rates.

  • 4

    The GOAL trial achieved over 99% consent and retention rates, demonstrating the effectiveness of community engagement in clinical trials.

  • 5

    RRCU's iterative community-informed approach allows for ongoing consultation and adaptation, addressing local needs and enhancing trial feasibility.

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