Community-informed trial design and implementation to optimize recruitment and retention in low-income settings: lessons from rheumatic heart disease trials in Uganda - Scorecard - 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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Clinical Scorecard: Designing and Implementing Community-Informed Trials to Enhance Recruitment and Retention in Low-Income Areas: Insights from Rheumatic Heart Disease Studies in Uganda

At a Glance

CategoryDetail
ConditionRheumatic Heart Disease (RHD)
Key MechanismsCommunity engagement, group-based consent, personalized communication, family-friendly participation
Target PopulationChildren and young adults in low-income areas
Care SettingClinical trials in low- and middle-income countries

Key Highlights

  • RHD affects at least 54.8 million people globally, causing over 370,000 deaths annually.
  • Community-informed approaches led to consent rates exceeding 99% and retention rates over 97%.
  • Secondary prophylaxis adherence was documented as low as 27% in LMIC settings.

Guideline-Based Recommendations

Diagnosis

  • Utilize echocardiographic screening for early detection of RHD.

Management

  • Implement secondary antibiotic prophylaxis to prevent disease progression.

Monitoring & Follow-up

  • Engage community advisory boards for ongoing feedback during trials.

Risks

  • Cultural barriers and stigma may hinder recruitment and retention.

Patient & Prescribing Data

Children with early RHD in Uganda

Oral penicillin prophylaxis may be non-inferior to injectable benzathine penicillin G.

Clinical Best Practices

  • Incorporate community feedback into trial design and implementation.
  • Provide family-friendly participation structures to enhance retention.

Related Resources & Content

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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