S127: CONSORTIUM ON NEWBORN SCREENING IN AFRICA FOR SICKLE CELL DISEASE

Abstract

Background: Sickle cell disease (SCD) is an inherited blood disorder that causes abnormalities in the oxygen-carrying protein hemoglobin found in red blood cells, leading to severe long-term health effects. According to the World Health Organization, more than 300,000 babies are born each year with SCD globally with majority in sub-Saharan Africa failing to reach the age of five. With early identification, low-cost treatments known to be effective in high-income settings for several years, can improve the health of children with SCD. Yet, SCD has not received much funding in many African countries as a health priority limiting available diagnostic and treatment services for it. The Consortium on Newborn Screening in Africa for SCD (CONSA), established in 2018, is a part of the American Society of Hematology’s broad initiative to strengthen the SCD response globally through advocacy and research generation. CONSA Program Goals and Objectives Demonstrate the effectiveness of early identification and clinical interventions for newborns with SCD Create sustainable, expanded networks for newborn screening and clinical interventions Foster collaboration between African hematologists and public health services to develop an organized network of researchers for conducting quality studies and publishing results Increase hematology capacity throughout sub-Saharan Africa CONSA introduces standard-of-care practices for screening and early intervention therapies (including antibiotics and malaria prophylaxis, folic acid supplements, family education and counseling, and immunizations) at participating clinical institutions, screening 10,000 – 16,000 babies per year in each country, and providing clinical follow-up for babies diagnosed with SCD. A shared registry captures data from CONSA institution sites, which will be used to estimate the prevalence of SCD in member countries and evaluate the effectiveness of the interventions for the survival of newborns to five years of age. Currently, CONSA is working in seven countries, Ghana, Kenya, Liberia, Nigeria, Tanzania, Uganda, and Zambia. Hematologists and public health officials participating in the consortium have mobilized networks of screening laboratories, SCD or pediatric hematology clinics, teaching hospitals, regional referral hospitals, universities, and satellite clinics to screen newborns and provide clinical services protocol. Alongside the research showcasing the health outcomes of newborns screened and delivered early interventions, the consortium is working to ensure the long-term sustainability of programs through government, corporate, and other partner support. All country sites launched screening in 2021. As of November 15, over 17,000 babies have been screened with over 150 found to be living with SCD. Despite challenges from the COVID-19 pandemic, including population concerns of going to health clinics, need to protect SCD patients from transmission, and supply chain breakdowns, CONSA looks forward to continuing to expand newborn screening efforts for the next several years. Conclusion: The presentation will provide an overview of CONSA’s goals and current work to screen and provide care for newborns with SCD, despite challenges from the COVID-19 pandemic. The presentation will also include details from the Nigeria clinical sites, case studies of current babies with SCD, and recent work done to strengthen Nigeria’s national newborn screening and clinical eff