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Opportunities and Challenges for Surveillance of Congenital Anomalies in Sub-Saharan Africa
Emma Kalk1, Helen Louise Malherbe2, Ushma C Mehta3
1Centre for Integrated Data and Epidemiological Research, School of Public Health, University of Cape Town, Cape Town, South Africa.
Insights
The sub-Saharan African Congenital Anomalies Network (sSCAN) aims to improve care for congenital anomalies (CA) in Africa. It fosters collaboration and data sharing to address the significant burden of CA in the region.
Area of Science:
- Public Health
- Epidemiology
- Global Health
Background:
- Congenital anomalies (CA) are a major cause of mortality in neonates and children under five, particularly in sub-Saharan Africa.
- Limited epidemiological data on CA burden, distribution, mortality, disability, and morbidity hinders research and interventions in sub-Saharan Africa.
- The sub-Saharan African Congenital Anomalies Network (sSCAN) was established to address fragmented research, surveillance, and care for CA in the region.
Purpose of the Study:
- To establish a community of practice for congenital anomalies (CA) in sub-Saharan Africa.
- To promote prevention, early diagnosis, and improved care for children with CA and their families.
- To determine CA prevalence, promote preventive interventions, and enhance health outcomes through resource sharing, data pooling, and capacity building.
Main Methods:
- Established a community of practice involving 16 projects across 12 sub-Saharan African countries.
- Facilitated resource and expertise sharing, common public health response strategies, and data pooling for comparative analysis.
- Focused on capacity building to address CA research, surveillance, and care challenges.
Main Results:
- The sSCAN network includes 16 projects across 12 countries, with limited intra-African collaboration.
- Challenges to regional data sharing included lack of data harmonization, varied funding, and data protection legislation.
- sSCAN has hosted webinars, supported grant applications, and facilitated publications, making resources available online.
Conclusions:
- The sSCAN platform offers a valuable opportunity to build capacity and share expertise for addressing CA in sub-Saharan Africa.
- Optimizing data use through sSCAN can lead to contextually relevant solutions for congenital anomalies in the region.
- Enhanced collaboration and data sharing are crucial for improving outcomes for children with CA in sub-Saharan Africa.
Introduction:
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.
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