Given the high burden of Sickle Cell Disease (SCD) in Africa, the Sickle Pan-African Research Consortium (SPARCO) funded by the US National Institute of Health has over the last four years developed the infrastructure for future research in SCD and strengthened skills in health services.
The project which commenced in 2017 and ended in March 2021 had three participating countries- Tanzania (which is the hub), Ghana and Nigeria.
It is part of the SickleInAfrica consortium which has other initiatives like the Sickle Africa Data Coordinating Center (SADaCC), and Sickle Cell Pan African Network (SPAN).
SPARCO Nigeria is domiciled at the Centre of Excellence for Sickle Cell Disease Research and Training, University of Abuja (CESRTA) and has 22 collaborating centres across the six geopolitical zones of the country.
SCD database
According to SPARCO Nigeria Principal Investigator and Director, Centre of Excellence for Sickle Cell Disease Research and Training, University of Abuja, Prof. Obiageli Nnodu, before the commencement of SPARCO in Nigeria, there was neither patient consented electronic, current multilevel standard of care guidelines, few skilled health care workers for multidisciplinary management of SCD nor detailed plan for cohort and implementation science research in SCD. Hydroxyurea, (a useful disease modifying treatment) was neglected in the management of SCD.
“SickleInAfrica was therefore saddled with the responsibility of establishing a SCD database of 6,000 paediatric and adult sickle cell patients and uniform SCD standard of care guidelines for sub-Saharan Africa and plan future research in SCD”. Prof. Nnodu said.
She also said that so far, SPARCO Nigeria has recruited 6,453 in the SCD registry, developed skills in SCD database management and genetic counselling.
“Furthermore, several researches have been conducted with publications in local and international peer reviewed publications in reputable journals. The outcome of these researches will inform decision making, strengthen the health system and inform patients and caregivers on new approach to manage sickle cell disease.
Ongoing studies include a Comparison of Hydroxyurea Usage across Ghana, Nigeria and Tanzania led by Nigeria and the Application of GIS to Follow-up Babies Identified by New Born Screening for SCD in Gwagwalada, Abuja. Research Fellowship grants have also been awarded for research studies in SPARCO priority areas such as Cohort studies describing spectrum of disease, newborn screening, prophylaxis against pneumococcal infections in sickle cell disease in Africa also Hydroxyurea for sickle cell disease in Africa have been planned“, the director added.
Standard of care guidelines
Prof Nnodu also pointed out that a great resource developed by SPARCO apart from the Sickle Cell Disorder disease registry is the Standard of Care guidelines for the management and control of SCD for tertiary care level was completed in year three following a review of over 10 existing guidelines.
SPARCO Standard of Care Guidelines which has been stepped down to lower levels of health care ((Secondary, Primary and Home Care) has also been shared with the Collaborative Centres, introduced to the Federal Ministry of Health and World Health Organization Africa.
Nneka Ukachukwu
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