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

在撒哈拉以南非洲，对先天性异常（脊柱裂、腭裂、肢体缺陷、唐氏综合症和许多其他异常）的关注有限，这导致对其发生的频率和原因、如何通过公共卫生方案最好地预防它们的发生、或如何满足受影响儿童和家庭的专业保健和社会需求以提高生存和生活质量的认识和理解存在很大差距。目前，先天性异常估计约占5岁以下儿童死亡的10%。解决这个问题有了新的紧迫性。可持续发展目标确定了降低新生儿和儿童死亡率和发病率的具体目标，减少弱势群体（如先天性异常人群）被抛在后面的卫生不平等现象，并确保所有儿童都能获得高质量的卫生保健。此外，最近发生的两起事件表明，需要更好地了解人口中的先天性异常。非洲是世界上艾滋病毒负担最高的地区，重要的是孕妇要为自己和婴儿获得最好的抗病毒药物，但人们担心一种新的抗逆转录病毒药物可能会增加先天性异常的风险——迫切需要更多的数据和研究来解决这一问题和相关问题。最近在拉丁美洲，寨卡病毒流行使全世界的注意力集中在孕产妇感染可能导致先天性异常上，这再次突显出人们对非洲孕产妇感染的影响缺乏了解，并且缺乏对新流行病的准备。这个为期一年的种子项目将建立一个撒哈拉以南非洲先天性异常监测、预防和护理网络。该网络的目的是通过监测和研究建立一个证据基础，提高合作研究的能力，并为改进政策和实践铺平道路，促进先天性异常的预防和对受影响儿童和家庭的护理。我们聚集了来自9个非洲国家的多个利益攸关方（学术研究人员、卫生部、患者组织、卫生保健专业人员），包括所有在这一领域最有经验的国家以及主要的国际伙伴。到一年后，我们将商定治理结构、数据共享机制、“实践社区”网站、研究重点和进一步的资助建议。我们还将商定一份立场文件，根据现有数据、建模和估计以及对撒哈拉以南非洲政策、实践和经验的调查，列出个人、家庭和社区一级先天性异常的负担。这份立场文件将作为向各国卫生部提出建议的基础，以提高先天畸形在其国家卫生议程中的优先地位。我们还将探索利用或开发新的移动和其他技术来协助数据收集和医疗保健的潜力。新的网络将在坎帕拉举行会议，并组成委员会，这些委员会将在全年继续工作。未来，该网络预计将扩展到该地区更多的国家，并包括更多的利益攸关方。来自9个非洲国家的合作伙伴对这个网络有着极大的热情。这是一个令人兴奋的机会，可以在关键时刻在撒哈拉以南非洲的先天性异常预防和护理方面做出一步改变。

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.