BACKGROUND

Sickle cell disease (SCD) is an inherited blood disorder that causes red blood cells to distort and become stuck in blood vessels, blocking oxygen flow throughout the body. It can cause severe pain, stroke, organ failure, and death. According to the World Health Organization, more than 300,000 babies are born each year with SCD in sub-Saharan Africa, and the majority of them do not reach the age of five. With early identification, low-cost treatments can greatly improve the long-term health of children with SCD. 

The Consortium on Newborn Screening in Africa for SCD (CONSA) introduces standard-of-care practices for screening and early intervention therapies (such as antibiotic prophylaxis and immunizations) at participating institutions, screening 10,000 – 20,000 babies per year in each country, and providing clinical follow-up for babies diagnosed with SCD. Hematologists and public health officials participating in the consortium have mobilized networks of screening laboratories, SCD or pediatric hematology clinics, teaching hospitals, universities, and satellite clinics to screen babies and provide clinical services per the consortium protocol. The first newborn screening and clinical networks launched in 2020.

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

PARTNERS

CONSA was created and launched by the American Society of Hematology (ASH) together with its partners, including hematologists and other health officials, ministries of health ministries of health, universities, teaching hospitals and regional or local health clinics, pharmaceutical companies, SCD patient advocacy groups, and more. We continue to seek partners to join in this work.