Sickle Pan African Research Consortium Nigeria (SPARC-NEt) - Nigeria has the highest prevalence of sickle cell disease (SCD) in the world with an estimated 150,000 babies
born annually. Children with SCD in Africa are particularly susceptible to infections, with about 50%-90% dying
before five years of age. This burden can be substantially reduced by early diagnosis and supportive care with
penicillin prophylaxis, and hydroxyurea (HU) treatment, especially for those at risk of stroke. However, these
interventions are yet to be widely implemented in patients with SCD in Nigeria. The Sickle Pan African Research
Consortium (SPARCO), with collaborative sites in Ghana, Nigeria and Tanzania was funded by the NIH/ NHLBI
in 2017 to establish the infrastructure for future research in SCD. The SPARCO Site in Nigeria is set up at the
Centre of Excellence for Sickle Cell Disease Research &Training, University of Abuja (CESRTA). In the first
phase of the award, we established the management structure in relation to the Clinical and Data Coordinating
Centres and participated actively in consortium working groups’ activities. We obtained and maintained ethical
approvals; established a REDCap database under the guidance of the Sickle Africa Data Coordinating Centre
(SADaCC); and successfully recruited 4,687 patients across 19 sites using uniform case report forms in
collaboration with the Sickle Cell Support Society of Nigeria. (Figure) We delivered specialized training in
research and health care management of SCD to 915 health care workers including those in primary health care
centres (PHCs). We developed a curriculum for a Master’s degree in Clinical Research and a Postgraduate
Diploma in Bioinformatics to address identified gaps. We analyzed preliminary data from the registry and
described the clinical phenotypes of SCD in SPARCO Nigeria cohort and conducted an implementation study
on newborn. Building on these successes, we are now aiming to sustain, enhance and grow the SCD Network
in Africa in order to advance SCD-related epidemiological, translational and clinical research and policy through
the Sickle Pan African Research Consortium NigEria (SPARC-NEt) Cohort Study. Our strategy is to increase
the SPARC-Net SCD Cohort to 9,000 by: a) recruiting additional 2,000 individuals and bringing in six additional
recruitment sites and b) expanding newborn screening to establish a birth cohort of 1000 SCD patients. We will
expand, implement, and evaluate the use of the SPARCO Standards of Care (SoC) guidelines for the follow up
and management of patients with SCD in the SPARC-NEt Sites and determine the impact of training of, and
engagement with, health workers, parents and support groups on the overall health outcomes for individuals with
SCD in Nigeria. Additionally, we described three potential implementation and cohort studies that could be
adopted by the consortium including a) assess patient characteristics and incidence of clinical events using
SPARCO SoC, b) evaluate the impact of HU utilization on clinical and haematological outcomes in patients within
the SPARC-Net cohort, and c) using genomic approaches to investigate the association between changes in
gut microbiome, HbF levels and frequency of vaso-occlusive crisis in SPARC-Net SCD birth cohort.
