Abstract
Opportunities and Challenges for Surveillance of Congenital Anomalies in Sub-Saharan Africa
Kalk, E.
Malherbe, H. L.
Mehta, U. C.
Mumpe-Mwanja, D.
Diseko, M. D.
Ayede, A. I.
Kisa, P.
Osoro, C. B.
Bello, G.
Fairlie, L.
Chepkemoi, A.
Shabani, H. K.
Sie, A.
Tegene, S. A.
Serunjogi, R.
Leke, A. Z.
Dolk, H.
Mosha, L. B.
Birth Defects Res. 2026; 118e70075
Permanent descriptor
https://doi.org/10.1002/bdr2.70075INTRODUCTION: Congenital anomalies (CA) are ranked as the 3rd and 4th leading cause of neonatal and under-5 mortality, respectively. Over 30% of infants born with a serious CA are found in sub-Saharan Africa. Yet there are few robust epidemiological data on the burden and distribution of CA and associated mortality, disability, and morbidity, which limits research and investment in clinical and public health interventions. The sub-Saharan African Congenital Anomalies Network (sSCAN) was established in 2021 to address the fragmented research, surveillance, and care programmes for children with CA in the region. METHODS: The sSCAN established a community of practice with the long-term aim to promote the prevention and early diagnosis of CA and care for children and families, determining prevalence, promoting preventive interventions, and improving health outcomes by: (1) Sharing resources and multidisciplinary expertise; (2) Establishing a common response to public health questions; (3) Pooling and comparing data between countries; (4) Capacity building. RESULTS: The sSCAN includes 16 projects across 12 countries, in addition to other stakeholders in sub-Saharan Africa. Most projects are fully or jointly supported by donor partners with a specific disease/exposure focus: collaboration within Africa is uncommon. Lack of data harmonization, varied funding streams and related data access, and country- and institution-specific data-protection legislation limited regional data sharing. The sSCAN has hosted 15 webinars which are available with other resources on the website, and supported grant applications and publications. CONCLUSION: The sSCAN platform can provide opportunities to build capacity, share expertise, and optimize data use toward contextually-relevant solutions for CA in sub-Saharan Africa.