Ghana-SPARCO: Ghana Sickle Pan-African Research Consortium - PROJECT SUMMARY
Sickle Cell Disease (SCD) is a recessively inherited disorder characterized by disordered hemoglobin
structure, aberrant endothelial interactions, systemic inflammation, oxidant stress, and activation of the
coagulation system. These abnormalities underlie a myriad of complications including acute vaso-occlusive
syndromes and a multi-system progressive chronic end-organ damage. Sub-Saharan Africa (SSA) bears a
disproportionately higher burden with an estimated 15 million of the world’s 25 million SCD individuals; 75%
of all babies born with SCD; & mortality rate for children under 5 range between 50%-90%. These include
absence of National control programs, dearth of basic facilities to manage patients, absence of systematic
screening for SCD, pervasive lack of implementation of evidence-based preventative interventions, cultural
misconceptions about the genesis of the disease, and lack of governmental support. By the sheer numbers
of patients in Africa, there is a potential for large volumes of clinical information to be harvested though
operational research for analyses to inform evidence-based decision-making on healthcare, as well as
healthcare policies for SCD on the continent. To this end, the Sickle Pan-African Research Consortium
(SPARCo) in 2017 started a registry across multiple sites in three countries: Ghana (an applicant for the
current U01 grant), Nigeria, and Tanzania. In the first phase of SPARCO, we established a collaborative site
in Kumasi and enrolled 2,915 SCD patients including 1,453 from our Newborn screening program into a
registry, and built capacity for future research studies. In this second phase, we have added an in-country
Satellite site in the capital city Accra, which has well developed clinical, training and research programs in
SCD, to form Ghana-SPARCO. Our overarching goal is to establish a prospective cohort of 6,000 individuals
living with SCD across the lifespan with a dual purpose of understanding: 1) the determinants of the protean
manifestations of acute and chronic complications of SCD in a resource-limited setting, and 2) to conduct
implementation research to address, surmount & integrate the best resource-based standards of clinical
care. Our vision is to establish hubs of excellence for research and care for SCD in Ghana. We will work with
the Coordinating Center to; (i) establish a harmonized patient registry to, (ii) integrate standards of care for
SCD, (iii) conduct cohort studies focusing on an assessment of burden and predictors of neurovascular, renal
and infectious complications of SCD across the lifespan & (iv) conduct implementation research studies on
newborn screening, retention of adolescence in SCD clinics & develop an implementation strategy for routine
integration of preventative interventions for SCD. Achieving these benchmarks will help establish the
infrastructure to develop a SCD in SSA Research Network.
