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Publications

Journal Article Ppublish

PubMed: 42272081 DOI: 10.1002/bdr2.70075

Opportunities and Challenges for Surveillance of Congenital Anomalies in Sub-Saharan Africa.

Birth Defects Res 118(6):e70075

Authors: Emma Kalk, Helen Louise Malherbe, Ushma C Mehta, Daniel Mumpe-Mwanja, Modiegi Dianah Diseko, Adejumoke Idowu Ayede, Phyllis Kisa, Caroline Bonareri Osoro, George Bello, Lee Fairlie, Audrey Chepkemoi, Hamisi K Shabani, Ali Sie, Samrawit Abebaw Tegene, Robert Serunjogi, Aminkeng Zawuo Leke, Helen Dolk, Linda Barlow Mosha

Affiliations

  • Centre for Integrated Data and Epidemiological Research, School of Public Health, University of Cape Town, Cape Town, South Africa.
  • Centre for Human Metabolomics, Desmond Tutu School of Medicine, Faculty of Health Sciences, North-West University, Potchefstroom, South Africa.
  • Division of Clinical Pharmacology, Department of Medicine, University of Cape Town, Cape Town, South Africa.
  • Makerere University-Johns Hopkins University Research Collaboration (MU-JHU), Kampala, Uganda.
  • Botswana Harvard Health Partnership, Gaborone, Botswana.
  • Department of Paediatrics, College of Medicine, University of Ibadan and University College Hospital, Ibadan, Nigeria and Centre for African Newborn Health and Nutrition, University College Hospital, Ibadan, Nigeria.
  • Makerere University College of Health Sciences, Kampala, Uganda.
  • International Training and Education Centre, Malawi and Ministry of Health, Public Health Institute of Malawi, Lilongwe, Malawi. Centre for Global Health Research, Kenya Medical Research Institute, Kisumu, Kenya.
  • Population and Health Impact Surveillance Group, KEMRI-Wellcome Trust Research Programme, Nairobi, Kenya.
  • Wits RHI, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
  • Moi Teaching and Referral Hospital, Eldoret, Kenya.
  • Muhimbili Orthopaedic Institute, Dar es Salaam, Tanzania.
  • Centre de Recherche en Santé de Nouna, Nouna, Burkina Faso.
  • Hararghe Health Research, Haramaya University, Harar, Ethiopia.
  • Centre for Maternal and Infant Research, Health Research Foundation (HRF), Buea, Cameroon.
  • School of Medicine, Ulster University, Belfast, UK.
  • Makerere University-Johns Hopkins University Research Collaboration (MU-JHU), Kampala, Uganda. Syneos Health, Morrisville, North Carolina, USA.

Abstract

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.

MeSH

Congenital Abnormalities, Mortality, Public Health, Research, Child