Clinical trial Recruiting at 4 sites Observational Ages Any age to 12 Months

Mapping the prevalence of sickle cell disease in Uganda

Official title: Prevalence and Mapping of Sickle Cell Trait and Disease in Uganda

Run by Children's Hospital Medical Center, Cincinnati · NCT06301893 · Data updated 2026-11-12

This study is trying to find out how common sickle cell trait and sickle cell disease are in Uganda by testing blood samples from infants to help improve health strategies for these conditions.

Quick facts

Study typeObservational
AgesAny age to 12 Months
SexAll
Enrollment1000000 (estimated)
SponsorChildren's Hospital Medical Center, Cincinnati
Academic / other
Locations4 sites (Kampala and 3 other locations)
StatusRecruiting
StartedSeptember 7, 2013
Main results expectedDecember 31, 2030
Study endsDecember 31, 2032
Registry record updatedJune 16, 2026
Trial IDNCT06301893 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates for this study include HIV-exposed infants from various districts in Uganda.

Probably not a fit

Patients who are not HIV-exposed or do not fall within the specified age range may not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to determine the prevalence of sickle cell trait (SCT) and sickle cell disease (SCD) across all districts in Uganda. By analyzing approximately 90,000 dried blood spot samples collected from HIV-exposed infants over a 12-month period, the study will provide crucial data on the burden of SCT and SCD in the country. The researchers will utilize advanced techniques such as hemoglobin analysis and geospatial mapping to illustrate the prevalence of these conditions and their associations with malaria and HIV. The findings will help inform public health strategies and interventions for sickle cell disease in Uganda.

Why it matters

Potential benefit: If successful, this study could significantly improve understanding and management of sickle cell disease in Uganda, potentially leading to better health outcomes for affected children.

How similar studies have gone: While there have been studies on sickle cell prevalence in specific regions, this comprehensive national mapping approach is novel and has not been extensively tested.

Who can join: the full rules

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Up to 1,000,000 samples may be collected during 2015 - 2030 following primary analysis based on surveillance findings.

Exclusion Criteria:

* Repeat samples on the same individuals during the study period will be excluded.

Where it's running

  • Makerere University
    Kampala, Uganda
    Recruiting
  • Minister of Health
    Kampala, Uganda
    Recruiting
  • National Coordinator EID Program
    Kampala, Uganda
    Recruiting
  • Sickle Cell Clinic Department of Pediatrics & Child Health Mulago Hospital
    Kampala, Uganda
    Recruiting

Study contacts

  • Principal investigator: Russell Ware, MD, PhD — Children's Hospital Medical Center, Cincinnati
  • Study coordinator: Teresa Latham, MA
  • Email: teresa.latham@cchmc.org
  • Phone: 5138037922

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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  • Adapting and testing PEN-Plus in Zambian primary care

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  • Newborn Sickle Cell Screening in Mozambique

    We’re testing a three-part plan to help babies in Mozambique get diagnosed early for sickle cell disease and start care quickly.

    Recruiting St. Jude Children's Research Hospital · Nhamatanda, Sofala · NCT07719972

  • Optimizing Hydroxyurea in Children with Sickle Cell in Africa

    This study tests whether raising hydroxyurea to a maximum tolerated dose is safe and beneficial for Ugandan children with sickle cell anemia already taking a fixed daily dose.

    Recruiting Phase 1/2 Children's Hospital Medical Center, Cincinnati · Kampala · NCT07708714

  • Hematopoietic stem cell editing to treat sickle cell disease

    This study tests whether a patient’s own blood stem cells can be edited to remove the sickle cell triggering gene and then returned to the patient.

    Recruiting Phase 1 Boston Children's Hospital · Boston, Massachusetts · NCT07708350

  • Virtual reality options to help with VOC pain in adults with SCD

    This study tests whether headset-based virtual reality can help reduce pain for adults with sickle cell disease during vaso-occlusive crises treated in an infusion center.

    Recruiting University of Maryland, Baltimore · Baltimore, Maryland · NCT07674277

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.