Consortium on Newborn Screening in Africa

The Consortium on Newborn Screening in Africa (CONSA) is an international network that seeks to demonstrate the benefits of newborn screening and early interventions for children with Sickle Cell Disease (SCD) in sub-Saharan Africa. 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. Complications for children with SCD can be vastly improved through early identification via newborn screening and medical interventions.

CONSA CONSA introduces standard-of-care practices for screening and early intervention therapies (such as antibiotic prophylaxis and immunizations) at participating institutions, screening 10,000 – 16,000 babies per year in each country and providing clinical follow-up for SCD-positive babies. 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 in these catchment areas and provide clinical services.

ASH provides financial support for Consortium-member countries to cover costs of reagents for first-line and confirmatory screening, dried blood spot filter-paper cards, and stipends for related staff. As of June 2020, clinical networks in Ghana, Kenya, Liberia, Nigeria, Uganda, Tanzania, and Zambia have been approved by the Consortium Steering Committee to launch participating sites.

CONSA stems from a multifaceted initiative ASH launched in 2016 to address the global burden of SCD. The ASH Sickle Cell Disease Initiative includes development of SCD clinical practice guidelines, expansion of education and training efforts, focused federal policy efforts, and establishment of the Sickle Cell Disease Coalition. In addition to these efforts, the ASH Research Collaborative (ASH RC) SCD Clinical Trials Network and Data Hub were developed with the mission to improve outcomes for individuals with SCD by expediting SCD therapy development and scientific discovery and facilitating innovation in clinical trial research. CONSA uses the Data Hub to store all data collected from the consortium.

CONSA Goals and Objectives

Evaluate 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 Partners

ASH partners with local clinical networks, sickle cell patient advocacy groups, country governments, United States government agencies, United Nations organizations, and industry partners to implement newborn screening and ensure the long-term sustainability of sickle cell disease response programs in sub-Saharan Africa.

Industry Partners

ASH thanks the following industry partners for contributing to our efforts:

Bristol Myers Squibb Novartis Rev Logo Black