Small Study Group A Report from Benin Workshop

The Natural History of Sickle Cell Disease in Africa and Elsewhere; and Neonatal Screening Programs including Education, Counseling and Management.

Co-Chairs: Kwaku Ohene-Frempong (USA) and Cherif Rahimy (Benin)

What is the prevalence of SCD in specific countries?

While systematic screening of large populations has not been conducted in most African countries, fairly good data on prevalence of SCD exists in many countries.

Estimates of incidence: Incidence of SCD in sub-Saharan African countries ranges between 1-2%.

How can more/most/all cases of SCD be identified?

What resources are available and what resources are needed to better study and care for people with SCD?

Several categories of resources are needed:

Which developing countries have neonatal screening programs?

Information for all developing countries was not available. Fairly reliable information is available for the following countries:

(Targeted means, not ALL newborns in the location are tested - only those determined by various parameters to be at risk for disease)

What steps and partnerships are needed to implement neonatal screening programs?

What measures are needed in resource-poor settings to effectively follow-up identified cases of SCD?