The Organisation brings together birth defect surveillance and research programmes from around the world with the aim of investigating and preventing birth defects and lessening the impact of their consequences.
The Organisation was first established in 1974, at a meeting in Helsinki, Finland, where representatives of malformation registries in ten countries were present.
The Organization now has 42 member programmes worldwide.
The mission of the International Clearinghouse of Birth Defects Surveillance and Research is to conduct worldwide surveillance and research into the occurrence and possible causes of Birth Defects with the aim of preventing them and decreasing their consequences.
- The strategic priority of the Clearinghouse is to conduct worldwide surveillance and to exchange data about birth defects.
The scope of the Clearinghouse includes fetal and childhood conditions of prenatal cause.
- Participating surveillance programmes will carry out systematic data collection and use the data for public health action.
- Public health action includes comparing prevalence rates, advocacy, policy development, conducting epidemiological studies of causes and consequences of birth defects, assessing preventive and therapeutic interventions, and interacting with the public, research institutions and relevant government agencies.
- The Clearinghouse:
- promotes standards and definitions for conducting surveillance of various types of birth defects.
- coordinates research activities with the affiliates and other collaborators.
- maintains appropriate standards for confidentiality and security of data.
OBJECTIVES AND FUNCTIONS
- Operates an international programme for regular exchange among its members of information on birth defects in populations covered by the member’s surveillance and research programs;
- Cooperates in investigations and research into changes in the occurrence of birth defects;
- Conducts joint epidemiological studies of the causes of birth defects;
- Advances the skills in surveillance and research into the occurrence of birth defects for the purpose of more effective identification of these conditions;
- Provides effective training in the surveillance and research of birth defects;
- Is an advocate for the surveillance, research and prevention of birth defects;
- Conducts assessments of preventive and therapeutic interventions for birth defects.