Natural History and Newborn Screening Working Group

Co-Chairs: Roshan Colah (India) and Nélio Januário (Brazil)

Overview

The incidence of sickle cell disease in sub-Saharan Africa ranges between 1 and 2 per cent. There is a need for reliable data to convince governments and other health policy makers of the importance in developing SCD programs and services. 

The implementation of neonatal and early childhood screening will lead to early diagnosis of SCD. To implement neonatal screening programs in low-income countries, long-term partnerships with countries with established newborn/neonatal screening programs and international donor agencies is necessary. 

As in high-income countries, follow-up care is the biggest challenge and necessary measures such as case management, primary care for SCD patients, the establishment of sickle cell centres and the development of networked database systems to link together screening sites must be taken to perform effective follow-up care on identified cases of SCD.