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

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

doi:10.1002/bdr2.70075

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

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
,

Research output: Contribution to journal › Article › peer-review

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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.

Original language	English
Article number	e70075
Pages (from-to)	1-10
Number of pages	10
Journal	Birth Defects Research
Volume	118
Issue number	6
Early online date	10 Jun 2026
DOIs	https://doi.org/10.1002/bdr2.70075
Publication status	Published (in print/issue) - 30 Jun 2026

Bibliographical note

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

Funding

UKRI MRC seed grant [MR/T039132/1] (PI Dr. Barlow-Mosha) and the Bill and Melinda Gates Foundation (BMGF) through the Ubomi Buhle grant INV-004508.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

surveillance
community of practice
congenital anomalies
sub‐Saharan Africa
regional network
Congenital Anomalies
Public Health
Prevalence
Humans
Community Of Practice
Africa South of the Sahara
Infant
Sub-Saharan African People
Regional Network
Congenital Abnormalities
Surveillance
Sub‐saharan Africa
Population Surveillance
Infant, Newborn
sub-Saharan Africa
Africa South of the Sahara/epidemiology
Population Surveillance/methods
Congenital Abnormalities/epidemiology
Population Surveillance - methods
Congenital Abnormalities - epidemiology - diagnosis
Africa South of the Sahara - epidemiology

Access to Document

10.1002/bdr2.70075

Birth Defects Research - 2026 - Kalk - Opportunities and Challenges for Surveillance of Congenital Anomalies in Sub‐SaharanFinal published version, 402 KBLicence: CC BY

Cite this

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. (2026). Opportunities and Challenges for Surveillance of Congenital Anomalies in Sub‐Saharan Africa. Birth Defects Research, 118(6), 1-10. Article e70075. https://doi.org/10.1002/bdr2.70075

@article{2954ce23b093453a938798e2fa378a28,

title = "Opportunities and Challenges for Surveillance of Congenital Anomalies in Sub‐Saharan Africa",

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.",

keywords = "surveillance, community of practice, congenital anomalies, sub‐Saharan Africa, regional network, Congenital Anomalies, Public Health, Prevalence, Humans, Community Of Practice, Africa South of the Sahara, Infant, Sub-Saharan African People, Regional Network, Congenital Abnormalities, Surveillance, Sub‐saharan Africa, Population Surveillance, Infant, Newborn, sub-Saharan Africa, Africa South of the Sahara/epidemiology, Population Surveillance/methods, Congenital Abnormalities/epidemiology, Population Surveillance - methods, Congenital Abnormalities - epidemiology - diagnosis, Africa South of the Sahara - epidemiology",

author = "Emma Kalk and Malherbe, \{Helen Louise\} and Mehta, \{Ushma C.\} and Daniel Mumpe‐Mwanja and Diseko, \{Modiegi Dianah\} and Ayede, \{Adejumoke Idowu\} and Phyllis Kisa and Osoro, \{Caroline Bonareri\} and George Bello and Lee Fairlie and Audrey Chepkemoi and Shabani, \{Hamisi K.\} and Ali Sie and Tegene, \{Samrawit Abebaw\} and Robert Serunjogi and Leke, \{Aminkeng Zawuo\} and Helen Dolk and Mosha, \{Linda Barlow\}",

note = "{\textcopyright} 2026 The Author(s). Birth Defects Research published by Wiley Periodicals LLC.",

year = "2026",

month = jun,

day = "30",

doi = "10.1002/bdr2.70075",

language = "English",

volume = "118",

pages = "1--10",

journal = "Birth Defects Research",

issn = "2472-1727",

publisher = "John Wiley \& Sons, Inc.",

number = "6",

}

Kalk, E, Malherbe, HL, Mehta, UC, Mumpe‐Mwanja, D, Diseko, MD, Ayede, AI, Kisa, P, Osoro, CB, Bello, G, Fairlie, L, Chepkemoi, A, Shabani, HK, Sie, A, Tegene, SA, Serunjogi, R, Leke, AZ, Dolk, H, Mosha, LB 2026, 'Opportunities and Challenges for Surveillance of Congenital Anomalies in Sub‐Saharan Africa', Birth Defects Research, vol. 118, no. 6, e70075, pp. 1-10. https://doi.org/10.1002/bdr2.70075

TY - JOUR

T1 - Opportunities and Challenges for Surveillance of Congenital Anomalies in Sub‐Saharan Africa

AU - Kalk, Emma

AU - Malherbe, Helen Louise

AU - Mehta, Ushma C.

AU - Mumpe‐Mwanja, Daniel

AU - Diseko, Modiegi Dianah

AU - Ayede, Adejumoke Idowu

AU - Kisa, Phyllis

AU - Osoro, Caroline Bonareri

AU - Bello, George

AU - Fairlie, Lee

AU - Chepkemoi, Audrey

AU - Shabani, Hamisi K.

AU - Sie, Ali

AU - Tegene, Samrawit Abebaw

AU - Serunjogi, Robert

AU - Leke, Aminkeng Zawuo

AU - Dolk, Helen

AU - Mosha, Linda Barlow

PY - 2026/6/30

Y1 - 2026/6/30

N2 - 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.

AB - 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.

KW - surveillance

KW - community of practice

KW - congenital anomalies

KW - sub‐Saharan Africa

KW - regional network

KW - Congenital Anomalies

KW - Public Health

KW - Prevalence

KW - Humans

KW - Community Of Practice

KW - Africa South of the Sahara

KW - Infant

KW - Sub-Saharan African People

KW - Regional Network

KW - Congenital Abnormalities

KW - Surveillance

KW - Sub‐saharan Africa

KW - Population Surveillance

KW - Infant, Newborn

KW - sub-Saharan Africa

KW - Africa South of the Sahara/epidemiology

KW - Population Surveillance/methods

KW - Congenital Abnormalities/epidemiology

KW - Population Surveillance - methods

KW - Congenital Abnormalities - epidemiology - diagnosis

KW - Africa South of the Sahara - epidemiology

UR - https://www.scopus.com/pages/publications/105041603615

U2 - 10.1002/bdr2.70075

DO - 10.1002/bdr2.70075

M3 - Article

C2 - 42272081

SN - 2472-1727

VL - 118

SP - 1

EP - 10

JO - Birth Defects Research

JF - Birth Defects Research

IS - 6

M1 - e70075

ER -

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

Abstract

Bibliographical note

Data Availability Statement

Funding

UN SDGs

Keywords

Access to Document

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