Birth Defects Surveillance

Birth Defects Surveillance: A Manual for Programme Managers was highly commended in the Public Health category of the British Medical Association 2015 Medical Book Competition. Congenital anomalies, also known as birth defects, are structural or functional abnormalities, including metabolic disorders, which are present from birth. Congenital anomalies are a diverse group of disorders of prenatal origin, which can be caused by single gene defects, chromosomal disorders, multifactorial inheritance, environmental teratogens or micronutrient deficiencies. This manual is intended to serve as a tool for the development, implementation and ongoing improvement of a congenital anomalies surveillance program, particularly for countries with limited resources. The focus of the manual is on population-based and hospital-based surveillance programs. Some countries may not find it feasible to begin with the development of a population-based program. Therefore, the manual focuses on the methodology needed for the development of both population-based and hospital-based surveillance program. Further, although many births in predominantly low- and middle-income countries occur outside of hospitals, some countries with limited resources may choose to start with a hospital-based surveillance program and expand it later into one that is population based. Any country wishing to expand its current hospital-based program into a population-based program, or to begin the initial development of a population-based registry, should find this manual helpful in reaching its goal. This manual provides selected examples of congenital anomalies. Typically, these anomalies are severe enough that they would probably be captured during the first few days following birth. Also, because of their severity and frequency, these selected conditions have significant public health impact, and for some there is a potential for primary prevention. Nevertheless, these are just suggestions, and countries can choose to monitor a subset of these conditions or add other congenital anomalies to meet their needs. This manual is a collaborative effort between the World Health Organization (WHO), the National Center on Birth Defects and Developmental Disabilities from the US Centers for Disease Control and Prevention (CDC) and the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR).

This atlas is a collaborative effort between the World Health Organization (WHO), the National Center on Birth Defects and Developmental Disabilities (NCBDDD) from the US Centers for Disease Control and Prevention (CDC), and the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR)"--P. iii.

This book presents the epidemiology of birth defects and their public health and social implications in India. As neglected childhood disorders, birth defects remain invisible in global maternal and child health dialogues. Birth defects services are emerging in India. This book approaches birth defects from a public health perspective, identifying the core functions of a birth defects service. Keeping in mind the complex task of providing multidisciplinary services for children with disabilities and complex medical conditions, the book examines the basic public health activities that have been put in place to address these conditions in India. The book describes birth defects surveillance and the challenges of acquiring accurate and timely data on birth defects against the background of India’s mixed health system. It discusses opportunities for prevention of birth defects and describes the structure and function of an emergent genetic service. It explores issues related to an integrated service for children with special healthcare needs, such as screening, early intervention, and rehabilitation. Furthermore, it describes the impact of these conditions on caregivers, including birth defects stigma. This book not only addresses a knowledge gap in the field of public health in India, but also explores the broader issues of services for children with disabilities and disabling conditions in low and low-middle income settings where access to health care is not universal. Given the depth and breadth of its coverage, the book offers an essential resource for birth defects researchers, researchers in the field of maternal and child health, public health/ global health, disability researchers, and researchers from the fields of rehabilitation sciences, nursing and anthropology. This book will be a valuable read for social medicine/community medicine departments, global health courses, and public health schools in India and other low middle-income countries.

Each year more than 4 million children are born with birth defects. This book highlights the unprecedented opportunity to improve the lives of children and families in developing countries by preventing some birth defects and reducing the consequences of others. A number of developing countries with more comprehensive health care systems are making significant progress in the prevention and care of birth defects. In many other developing countries, however, policymakers have limited knowledge of the negative impact of birth defects and are largely unaware of the affordable and effective interventions available to reduce the impact of certain conditions. Reducing Birth Defects: Meeting the Challenge in the Developing World includes descriptions of successful programs and presents a plan of action to address critical gaps in the understanding, prevention, and treatment of birth defects in developing countries. This study also recommends capacity building, priority research, and institutional and global efforts to reduce the incidence and impact of birth defects in developing countries.

The goal of this course is to provide participants with the foundational skills needed to begin the development implementation and ongoing improvement of a congenital anomalies surveillance programme in particular for countries with limited resources. It focuses on the methodology needed to develop either population-based or hospitalbased surveillance programmes. A set of congenital anomalies will be used as examples throughout this course. The specific examples used are typically severe enough that they would probably be captured within the first few days after birth have a significant public health impact and for some of them have the potential for primary prevention. Target audience This course is designed for individuals who are directly involved in the development implementation and daily activities related to congenital anomalies surveillance programmes in their countries and who will directly teach others. Learning objectives By the end of this course participants will be able to: 1. describe how to use data for the development of prevention campaigns and policy/programme evaluation; 2. describe how to best present data to policy-makers; 3. identify selected major external congenital anomalies for monitoring; 4. describe the tools needed to ascertain and code congenital anomalies; 5. describe the processes for managing and analysing data; 6. demonstrate how to calculate the birth prevalence of congenital anomalies.