NCT06301893|Recruiting
Uganda Sickle Surveillance Study (US-3)
Prevalence and Mapping of Sickle Cell Trait and Disease in Uganda
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Prevalence and Mapping of Sickle Cell Trait and Disease in Uganda
Sponsor study identifier
observational
1,000,000
1 country
4
Study Start
September 7, 2013
Actual (reported)Primary Completion
December 31, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
December 31, 2032
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
It is estimated that over 250,000 babies are born with sickle cell disease (SCD) annually in sub-Saharan Africa, and only 10% - 50% of them survive beyond five years of age. Data describing the magnitude of the sickle cell problem are lacking in most African countries. The available data on prevalence were mainly from older studies and small numbers of hospitalized patients. In Uganda, approximately 25,000 children are born with SCD but 70-80% die before their 5th birthday. Lehmann and Raper found 'sicklaemia' prevalence of 0.8% and 45% in the Sebei and Bambaa ethnic groups, respectively. A recent study found a SCT and SCD prevalence of 3% - 19% and 0% - 3%, respectively but this study addressed only 5 of Uganda's 111 districts and used a small convenience sample of children aged 6 - 60 months. The objective of this study is to determine the prevalence and map out the burden of SCT and SCD in Uganda.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
December 31, 2032
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
September 7, 2013
Actual (reported)March 4, 2024
Actual (reported)March 8, 2024
Actual (reported)December 31, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
December 31, 2032
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Incidence of HbSS and HbA
Incidence of sickle cell disease (HbSS) and sickle cell trait (HbA)
February 2014 to March 2015
Incidence of HbSS and HbA
March 2015 - March 2030
All Dried Blood Spot (DBS) samples collected from HIV exposed infants from all districts of Uganda from approximately February 2014 to March 2015 will be included in the primary analysis. Up to 1,000,000 additional samples may be collected during 2015 - 2030 following primary analysis based on surveillance findings.
Makerere University
Kampala, Uganda
Minister of Health
Kampala, Uganda
National Coordinator EID Program
Kampala, Uganda
Perkin Elmer instrumentation is used for standardized isoelectric focusing tests using dried blood spots, followed by chemical elution of hemoglobin and electrophoresis using pre-cast gels. Newborn sickle genotype results with normal hemoglobin (HbA) and sickle hemoglobin (HbS) are typically FA, FAS, or FS although other variants including HbC may be detected. Calls will be made on each sample by trained technicians but also reviewed by supervisory personnel. Demographic information will be entered directly into a web-based electronic data capture system.
Russell Ware, MD, PhD
Children's Hospital Medical Center, Cincinnati
Grace Ndeezi, MBChB, MMed, PhD
Department of Pediatrics & Child Health College of Health Sciences Makerere University
First Submitted
March 4, 2024
First Posted
March 8, 2024
Study Start
September 7, 2013
Actual (reported)Primary Completion
December 31, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
EXTEND EXpanding Treatment for Existing Neurological Disease
Contact the study team to confirm eligibility.
Sickle Cell Clinic Department of Pediatrics & Child Health Mulago Hospital
Kampala, Uganda
Study Completion
December 31, 2032
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
June 16, 2026
Record last verified: 2026-06
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Source: ClinicalTrials.gov.
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