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Sickle Pan-African Research Consortium (SPARCO) Uganda: Strengthening Capacity for Clinical Care, Research and Training in Sickle Cell Disease - SCRT Project.

Award Number: U01HL156914
ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/18/2021
PERIOD OF PERFORMANCE END DATE: 05/31/2026

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Sickle Pan-African Research Consortium (SPARCO) Uganda: Strengthening Capacity for Clinical Care, Research and Training in Sickle Cell Disease - SCRT Project. - Project Abstract: Most (75%), individuals living with Sickle Cell Disease (SCD) are found in sub-Saharan Africa (SSA), where the condition accounts for about 16% (150,000 deaths) annually of under-5 mortality. In high income countries, evidence-based strategies to control mortality and morbidity due to SCD, reduced by 68% the mortality of children 0 – 3 years with SCD from 1983 and 2002. This success was achieved through four interventions: Detection of SCD as early as possible in life, through screening; aggressive prevention, detection and treatment of fatal complications, especially infections; The use of hydroxyurea as a disease- modifying agent; comprehensive care programs. Uganda is one of the SSA countries with a high overall sickle cell (HbS) gene prevalence of 13%. SCD accounts for 18% of child mortality in Uganda with estimates that 50-80% of children with the condition die before their fifth birthday. The Department of Pediatrics & Child Health, Makerere University College of Health Sciences established a sickle cell clinic in 1968. The clinic has a sickle cell database with over 10,000 unique patient records that increases by 1000 new registrations annually. The team has developed local guidelines for management of patients with SCD, trains students, in addition to conducting high-quality research projects and NIH funded studies. There are however remaining challenges that include: 1) Inadequate comprehensive care to all patients that has resulted in high burden of SCD-related morbidity and mortality. Research done in Uganda has documented high prevalence of stroke, neurocognitive impairments, acute chest syndrome, and micro-albuminuria among children with SCD. 2) due to a lack of a comprehensive newborn screening program, many children are diagnosed later in life or die before diagnosis, and 3) Low use of hydroxyurea despite the findings that it is safe and effective for use in this setting. The team at Makerere University is applying to join the Sickle Pan-African Research Consortium (SPARCO) as one of the Collaborative Consortium new sites, with a goal of improving the health outcomes of individuals with of SCD disease in Uganda, through implementation of evidence-based interventions. We shall leverage the resources and lessons learnt from NIH investments in Uganda including the H3Africa biorepository (UH2 HG007051; Joloba), MEPI project (R24TW008886, Sewankambo) and other ongoing grants including the HEPI project (1R25TW011213-01, Kiguli) to achieve this. The project goal will be achieved through the following specific aims: Aim 1: To develop a centralized, electronic, patient consented haemoglobinopathy registry at Mulago National Referral Sickle Cell Clinic. Aim 2: To improve SCD patient outcomes in Uganda by establishing SCD standards of care. Aim 3: To advance SCD related research by conducting cohort studies and implementation science studies on patients enrolled in the SCD registry; and an additional study on additional study on the transition from pediatric to adult care by SCD adolescents. MakCHS has well- established, efficient mechanisms for coordinating and managing research grants. By the end of this 5-year support, we anticipate having a system to support the sustainability of high quality SCD research and clinical care that is scalable in Uganda and SSA.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2025 ( Subtotal = $0 )
2025	2024	MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES	CLINICAL RESEARCH BUILDING NEW MULAGO HILL ROAD	KAMPALA				UGA	Blood Diseases and Resources Research	000	4	11/9/2024	SUPPLEMENT FOR EXPANSION	$0
														Subtotal = $0

Issue Date FY: 2024 ( Subtotal = $319,246 )
2024	2024	MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES	CLINICAL RESEARCH BUILDING NEW MULAGO HILL ROAD	KAMPALA				UGA	Blood Diseases and Resources Research	001	4	9/17/2024	SUPPLEMENT FOR EXPANSION	$85,296
2024	2024	MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES	CLINICAL RESEARCH BUILDING NEW MULAGO HILL ROAD	KAMPALA				UGA	Blood Diseases and Resources Research	000	4	5/29/2024	NON-COMPETING CONTINUATION	$233,950
														Subtotal = $319,246

Issue Date FY: 2023 ( Subtotal = $161,914 )
2023	2023	MAKERERE UNIVERSITY COLLEGE O F HEALTH SCIENCES	CLINICAL RESEARCH BUILDING NEW MULAGO HILL ROAD	KAMPALA				UGA	Blood Diseases and Resources Research	000	3	7/31/2023	NON-COMPETING CONTINUATION	$161,914
														Subtotal = $161,914

Issue Date FY: 2022 ( Subtotal = $161,914 )
2022	2022	MAKERERE UNIVERSITY COLLEGE O F HEALTH SCIENCES	CLINICAL RESEARCH BUILDING NEW MULAGO HILL ROAD	KAMPALA				UGA	Blood Diseases and Resources Research	001	2	6/3/2022	NON-COMPETING CONTINUATION	$161,914
2022	2021	MAKERERE UNIVERSITY COLLEGE O F HEALTH SCIENCES	CLINICAL RESEARCH BUILDING NEW MULAGO HILL ROAD	KAMPALA				UGA	Blood Diseases and Resources Research	000	1	6/3/2022	NEW	$0
														Subtotal = $161,914

Issue Date FY: 2021 ( Subtotal = $107,200 )
2021	2021	MAKERERE UNIVERSITY COLLEGE O F HEALTH SCIENCES	NEW MULAGO HOSPITAL COMPLEX	KAMPALA				UGA	Blood Diseases and Resources Research	000	1	5/31/2021	NEW	$107,200
														Subtotal = $107,200

Grand Total All Awards = $750,274

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Sickle Pan-African Research Consortium (SPARCO) Uganda: Strengthening Capacity for Clinical Care, Research and Training in Sickle Cell Disease - SCRT Project.

Award Number: U01HL156914

ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 09/18/2021

PERIOD OF PERFORMANCE END DATE: 05/31/2026

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