Sub-Saharan African Network for Congenital Anomalies: Surveillance, Prevention and Care

In Sub-Saharan Africa, there has been limited attention to congenital anomalies (spina bifida, cleft palate, limb defects, Down Syndrome and many others) which has led to a large gap in knowledge and understanding about their frequency and causes, how best to prevent them happening through public health programs, or how to meet the specialist healthcare and social needs of affected children and families in order to improve survival and quality of life. Currently, congenital anomalies are estimated to account for approximately 10% of child deaths under 5 years of age. There is a new urgency to tackle this problem. The Sustainable Development Goals set out targets for reducing neonatal and childhood mortality and morbidity, for reducing health inequity where vulnerable populations (such as those with congenital anomalies) are left behind, and to make sure that all children have access to quality healthcare. In addition, two recent events have shown the need to have better information about congenital anomalies in the population. Africa has the highest HIV burden in the world, and it is important that pregnant women receive the best antiviral medication for themselves and their babies, but a concern has been raised that one of the new antiretrovirals may raise the risk of congenital anomaly - much more data and research is needed to address this and related questions urgently. Recently in Latin America, the Zika virus epidemic focused the world's attention on the potential for maternal infections to cause congenital anomalies, and this again highlights the lack of knowledge about the effect of maternal infections in Africa, and lack of preparedness for new epidemics.

This one year seed project will set up a Sub-Saharan African Network for Congenital Anomalies: Surveillance, Prevention and Care. The aim of the network is to promote the prevention of Congenital Anomalies, and care for affected children and families, by building an evidence base through surveillance and research, improving capacity for collaborative research, and paving a pathway to improve policy and practice. We have gathered together multiple stakeholders (academic researchers, ministry of health, patient organisations, healthcare professionals) from 9 African countries, including all those with the most experience in this area along with key international partners. By the end of one year, we will have agreed a governance structure, data sharing mechanism, "community of practice" website, and research priorities and further funding proposals. We will also have agreed a position paper setting out the burden of congenital anomalies at the individual, family and community level based on available data, modelling and estimation, and survey of policy and practice and experience in Sub-Saharan Africa. This position paper will be the basis for making the case with national ministries of health to raise the priority of congenital anomalies in their national health agendas. We will also scope the potential of new mobile and other technologies to be used or developed to assist data gathering and healthcare. The new network will meet in Kampala, and form committees which will continue to work throughout the year. In future, the network would be expected to expand to more countries in the region, and include more stakeholders. There has been huge enthusiasm from the partners in 9 African countries for this network. This is an exciting opportunity to make a step change in congenital anomaly prevention and care in Sub-Saharan Africa at a critical time.

Globally in 2017, about 5.5 million children were born with congenital anomalies (CAs). As the fifth leading cause of death for children under-five, CAs were responsible for 584,900 deaths, over 10% of all under-five deaths. An estimated 96% of deaths related to CA occur in LMIC including Sub-Saharan Africa.

The rationale for this network rests on three pillars:
1) CA (structural anomalies present at birth) are important contributors to stillbirths and neonatal mortality and morbidity and disability in Africa and thus improving prevention and care is important for the attainment of Sustainable Development Goal 3.
2) Special problems exist in Africa relating to CAs including underdiagnoses, poor reporting, cultural/ stigma, little access to care, maternal nutritional, infectious and environmental causes, and post-surgical mortality.
3) There are few established CA surveillance centres in Africa and no co-ordination or networking. Recent concerns regarding antiretroviral safety in pregnancy, and the Zika virus epidemic, have reinforced calls for effective surveillance.

The network aims to promote the prevention of CA, and care for affected children and families, by building an evidence base through surveillance and research, improving capacity for collaborative research, and paving an impact pathway on policy and practice.

Objectives of this Seed Project are:
- To establish a Sub-Saharan African network for CA: Surveillance, Prevention and Care.
- To develop a position paper "The Burden of Birth Defects in Sub-Saharan Africa" in order to make an appropriate case for national funding of public health actions, care services and surveillance relating to CA
- To scope potential harnessing of new technologies

Starting with 9 African countries and global partners, this multidisciplinary network will include paediatricians, epidemiologists, geneticists, pediatric surgeons, social scientists, patient organisations, ministries of health, and academia.

The aim of the network which we propose to establish is to promote the prevention of Congenital Anomalies, and care for affected children and families, by building an evidence base through surveillance and research, improving capacity for collaborative research, and paving a pathway for impact on policy and practice.

This research will mainly benefit mothers and children in African countries. The network will ultimately help
- lead to a reduction in the neonatal/infant/child morbidity and mortality rates in SSA and help achieve the Sustainable Development Goal 3 (SDG-3) that aims to reduce under 5 mortality rate to less than 25 per 1,000 births by 2030
- contribute to the WHO "Every Newborn Action Plan" goal that all countries should reach a Neonatal Mortality Rate of 12 deaths per 1000 live births by 2030 and countries that have already reached the target should aim at reducing in-country inequities; and contribute to the ENAP target to reduce stillbirths
- contribute to the SDG aspiration to close the equity gap so that vulnerable population groups, such as children with birth defects, are not left behind
- contribute to the SDG Universal Health Coverage target that every child everywhere should by 2030 have access to quality care without financial hardship for parents and families.
- reduce the economic burden of healthcare costs associated with congenital anomalies through prevention
- contribute to looking beyond survival to quality of life and the effects of health and care on human capital
- reduce the stigma and disability associated with congenital anomalies which prevents care-seeking and enjoyment of family life

In addition, research facilitated by the network will have an impact globally, for example by producing much needed scientific evidence about the safety of medications used in pregnancy for maternal chronic and infectious diseases, or the risks to the unborn child to exposure to environmental factors, infections, and maternal diseases.