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

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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.