1.2 The Purpose of Congenital Anomalies Surveillance

Public health surveillance is defined as the ongoing, systematic collection, analysis and interpretation of health data for public health purposes, and the timely dissemination of public health information for assessment and public health response to reduce morbidity and mortality (3, 4). Surveillance allows for the planning, implementation and evaluation of health strategies, and the integration of data into the decision-making process to help prevent adverse health conditions.

The ultimate purpose of a surveillance programme is to prevent adverse health conditions and their complications. Surveillance data, once collected, are critical for determination of whether a programme is having any effect, evaluation of whether new strategies are necessary, as well as detection of problem areas and intended populations that require more intensive intervention and follow-up.

The objectives of a surveillance programme for congenital anomalies are to:

  • monitor trends in the prevalence of different types of congenital anomalies among a defined population;
  • detect clusters of congenital anomalies (outbreaks);
  • refer affected infants to appropriate services in a timely manner;
  • disseminate findings and interpretations to appropriate partner organizations and government agencies, in a timely fashion;
  • provide a basis for epidemiologic research (including risk factors) and prevention programmes;
  • allow evaluation of prevention programmes.

Surveillance of congenital anomalies has been used for one or more of the following purposes:

  • to measure the burden of congenital anomalies and identify high-risk populations;
  • to identify disparities in prevalence and outcomes by factors such as race or ethnicity, maternal age, socioeconomic level or geographic region;
  • to assess the effects of prenatal screening and diagnosis and other changes in diagnostic technologies on birth prevalence;
  • to describe short-term and long-term outcomes of children with congenital anomalies, and to provide information relevant to long-term management of individuals who are affected by serious congenital anomalies;
  • to inform public health and health-care policies and programmes and to plan for needed services among the affected population;
  • to guide the planning, implementation and evaluation of programmes to help prevent congenital anomalies (4) and to minimize complications and adverse outcomes among those affected by congenital anomalies;
  • to assess any additional risk and the nature of adverse outcomes (including congenital anomalies) for fetuses and infants exposed to medicines during pregnancy, to improve management and to inform national and global public health policies (5).