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 programme, particularly
for countries with limited resources. The focus of the manual is on population-based and
hospital-based surveillance programmes. Some countries may not find it feasible to begin
with the development of a population-based programme. Therefore, the manual focuses
on the methodology needed for the development of both population-based and hospitalbased
surveillance programmes. 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 programme and expand it later into
one that is population based. Any country wishing to expand its current hospital-based
programme into a population-based programme, 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).