1.1 Public Health and Surveillance of Congenital Anomalies

Possible responses:

• Surveillance means to monitor. It is focused and systematic observation.
• Police monitoring
• Weather monitoring

Public health surveillance is the:

• ongoing
• systematic collection
• analysis and interpretation of health data,
• for public health purposes.

Watch a video by Jay Walker, chairman of TEDMED, which shows how the first official compilation of public health data revealed unexpected statistical trends.

Some of these purposes include:

• To assess the prevalence of certain conditions in a country
• To identify areas with high or low rates, to try and identify epidemics or clusters of illness and disease
• To disseminate public health information for assessment and public health response
• To plan, implement and evaluate health strategies:
  • For example, surveillance data are critical to help determine whether a programme is having an impact, to evaluate if new strategies are necessary, and to identify problem areas and target populations that require more intensive intervention and follow-up
• To integrate data with the decision-making process for the prevention or care of adverse health conditions
• To document burden, to develop public health priorities
• To develop political and social will
• To document the burden of congenital anomalies to plan for services

Possible responses:

• Congenital anomalies
• Congenital abnormalities
• Congenital malformations:
  • the use of this term to refer to congenital anomalies in general is not appropriate because malformations are only one type of congenital anomaly, which in addition include, as mentioned in the ICD-10, Chapter XVII, deformations, disruptions and dysplasias.

Tell participants:

• For the remainder of the course, we will be using the preferred term since it is the term most commonly used in this region. Given the stigmatization of people with disabilities, it is important to discuss that congenital anomalies is preferred terminology at WHO, but for clarity the terms are used interchangeably with congenital anomalies, in this material.

Objectives of a congenital anomalies surveillance programme include:

• To collect systematic, valid, reliable and timely data on congenital anomalies
• To define the magnitude and distribution of congenital anomalies by time, person and place
• To identify high-risk populations or identify clusters (aggregation of cases)
• To monitor trends in the prevalence of different types of congenital anomalies in a defined population
• To provide scientific data and information for priority setting, planning, implementing and evaluating congenital anomalies programmes
• To refer affected infants to appropriate services in a timely manner
• To disseminate findings and interpretations to appropriate partner organizations and government agencies in a timely fashion
• To provide a basis for epidemiologic research and prevention programmes
• To inform public health and health-care policies and programmes
• To plan for needed services among the affected population
• Ultimately, the purpose of a congenital anomalies surveillance programme can be to evaluate programmes; to define, characterize and help support prevention efforts for these congenital anomalies and their associated complications; and to help identify resources for individuals living with a congenital anomaly.

Possible responses:

• To measure the burden of congenital anomalies and identify high-risk populations
• To identify disparities in prevalence and outcomes by factors, which could include race/ethnicity, maternal age, socioeconomic level or geographic region
• To assess the impact of prenatal screening and diagnosis, and other changes in diagnostic technologies, on the birth prevalence of congenital anomalies
• To describe short-term and long-term outcomes for children with congenital anomalies, and 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 plan for needed services in the population