Birth Defect Surveillance Organisations/Networks
Expert organisations and networks involved with the research and surveillance of congenital anomalies across the world. Each of these networks have lists of member national surveillance programmes.
Latin American Collaborative Study of Congenital Malformations (ECLAMC)
ECLAMC is a program of clinical and epidemiological investigation of developmental congenital anomalies in Latin American hospital births. This is a research program of risk factors in causing malformations, under case-control methodology. In member hospitals, babies born with a congenital anomaly are registered, and for each baby with a congenital anomaly a baby without congenital anomaly is registered as a control. Since more than half of the defects have unknown causes, the main objective and strategy is the prevention by research.
Red Latino Americana de Malformaciones Congénitas (ReLAMC)
A new network of Latin American surveillance systems for congenital anomalies, including both national congenital anomaly registries and ECLAMC. This new network is building on the long experience of ECLAMC (a network of hospitals conducting congenital anomaly surveillance in Latin America) and EUROCAT (the European population-based network).
International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR)
This voluntary non-profit international organisation is comprised of 42 member programmes and works to unite birth defect surveillance and research programmes from around the world. ICBDSR assists local registries with monitoring trends in the prevalence of birth defects and developing strategies to prevent them.
Information is available on the members’ directory, upcoming international meetings and resources such as the PreSurv Suite and PEACE Tool. There is also an information section on Zika Virus Infection.
European Surveillance of Congenital Anomalies (EUROCAT)
EUROCAT is the European network of population-based registries for the epidemiologic surveillance of congenital anomalies. It receives data from 23 European countries. The EUROCAT website contains critical information on coding and classification, prevalence data, key public health indicators, prevention, prenatal screening and statistical monitoring. The website also has details of publications, European Symposia, the EUROCAT Data Management Program and contact details for all member registries. Several daughter networks specialise in specific aspects of birth defect surveillance. EUROmediCAT specialises in pregnancy pharmacocovigilance to improve the evidence base regarding medication safety in pregnancy. EUROlinkCAT is establishing a European cohort of children with congenital anomalies, to provide information about their long term outcomes in terms of survival, morbidity and educational outcomes. Both these daughter networks are based on data linkage between congenital anomaly registries and administrative healthcare and other databases.
South-East Asia Region New-born and Birth Defects (SEAR-NBBD) Surveillance Initiative
In 2014, WHO-SEARO created an online system of newborn-birth defects (SEAR-NBBD) database. The system was designed to support data management for newborn health, birth defects and stillbirths. The aim is to establish robust assessment of neonatal health and monitor the occurrence of birth defects in the region; to set relevant and appropriate baseline measures. This surveillance network in collaboration with CDC-USA also provides the necessary training and monitoring required to run the system effectively.
U.S. Centers for Disease Control and Prevention (CDC)
The Centers for Disease Control and Prevention feature a specific resource area on birth defects. This area contains key information on birth defect prevalence statistics for the United States, prevention of birth defects and materials/multimedia both for healthcare professionals and families. There are also birth defects tracking logic models and tools for healthcare professionals and researchers interested in this field as well as surveillance guidelines. The website also contains specific clinical information on a range of birth defects.
U.S. Centers for Disease Control and Prevention (CDC)'s Birth Defects Study to Evaluate Pregancy ExposureS (BD-STEPS)
BD-STEPS is the next endeavor for the Centers for Birth Defects Research and Prevention (CBDRP) to understand the causes of birth defects. The CBDRP will further examine promising findings from the National Birth Defects Prevention Study (NBDPS), one of the largest studies of birth defects causes in the United States. The NBDPS provided important data on how nutrition, smoking, obesity and medicines affect pregnancies. BD-STEPS will dig deeper into the results of that past research.
National Birth Defects Prevention Network (NBDPN)
The NBDPN is a volunteer-based organization that addresses the issues of birth defects surveillance, research, and prevention under one umbrella by maintaining a national network of state and population-based birth defects programs. Members include public health professionals, epidemiologists, academics, parents, and others committed to understanding factors that may lead to birth defects, identifying strategies for reducing birth defects, and working to prevent potential secondary disabilities through earlier detection and optimal care.
World Health Organization, the Special Programme for Research and Training in Tropical Diseases (WHO-TDR)
TDR, the Special Programme for Research and Training in Tropical Diseases, is a global programme of scientific collaboration that helps facilitate, support and influence efforts to combat diseases of poverty. It is hosted at the World Health Organization (WHO), and is sponsored by the United Nations Children’s Fund (UNICEF), the United Nations Development Programme (UNDP), the World Bank and WHO. WHO-TDR runs a pregnancy registry in a number of African countries, for monitoring of outcomes of medication exposures in pregnancy.
Folic Acid: Birth Defects Count
Birth Defects COUNT (Countries and Organizations United for Neural Tube Defects Prevention) is a global initiative to reduce death and lifelong disability resulting from neural tube defects, which are serious birth defects of the brain and spine.
CDC’s National Center on Birth Defects and Developmental Disabilities is working with the World Health Organization (WHO) and other partners on Birth Defects COUNT. The initiative builds on the success of folic acid fortification of cereal grain products labeled as enriched in many countries. A key strategy of the initiative is to increase folic acid intake among women of reproductive age to prevent neural tube defects. These efforts can have a significant impact on death and lifelong disability worldwide. BD Count helps countries establish and strengthen birth defect surveillance.
Organization of Teratology Information Specialists (OTIS)
The Organization of Teratology Information Specialists (OTIS) is organized exclusively to stimulate and encourage the dissemination of knowledge, education, and research in the field of clinical teratology, and to improve the abilities of teratology information services to provide accurate and timely information about prenatal exposures with the overall objective of improving the public health. MotherToBaby, a service of the Organization of Teratology Information Specialists, is dedicated to providing evidence-based information to mothers, health care professionals, and the general public about medications and other exposures during pregnancy and while breastfeeding. Not only do the experts at MotherToBaby provide information about exposures in pregnancy, they are also actively adding to that information by conducting MotherToBaby Pregnancy Studies.
European Network of Teratology Information Services (ENTIS)
The general objective for ENTIS is to coordinate and collaborate the activities of the different Teratology Information Services (TIS), and to collect and evaluate data in order to contribute to the primary prevention of birth defects and developmental disorders.
UK Teratology Information Service (UKTIS)
The UK Teratology Information Service (UKTIS) is commissioned by Public Health England on behalf of UK Health Departments. They provide a national service on all aspects of the toxicity of drugs and chemicals in pregnancy. Information can be provided to health professionals in the United Kingdom via telephone or online through TOXBASE. However, there is also a detailed list maternal and paternal exposures on their website with information available for both healthcare providers and patients. They also have a facility that allows women to report pregnancy exposures via ‘bumps’ (Best Use of Medicines in Pregnancy). A key role of UKTIS is to collect pregnancy outcome data from women who have been exposed to drugs and chemicals in pregnancy. This surveillance provides prospective data on the incidence of fetal complications. Such information is fundamental to expanding the limited available data on which to base advice and contribute to the provision of an individual risk assessment for a pregnant woman exposed to drugs and chemicals, and preconception advice for men and women concerning drug and chemical exposures. These follow up data are included in UKTIS monographs and are also published in peer reviewed journals.
Germany Teratogen Information Service (Embryotox)
The Pharmacovigilance and Counseling Center for Embryonic Toxicology of the Charité-Universitätsmedizin Berlin is a publicly funded institute, which since 1988 has been providing medical and other healthcare professionals with independent information on the tolerability of key medicines and on the treatment of common diseases during pregnancy and lactation. Within the framework of the pharmacovigilance network of the Federal Institute for Drugs and Medical Devices (BfArM) , data is collected (online or by phone) on the course of pregnancies in which the centre acts in an advisory capacity and these data are evaluated together with similar centers in other European centres.
The overarching concept of The LifeCycle Project is innovative research on the role of novel integrated markers of early-life stressors that influence health across the lifecycle using an open and long-term network of European cohorts that started during pregnancy or childhood. Europe has a strong tradition in population-based prospective cohort studies on health and diseases from pregnancy or childhood onwards. These cohorts are invaluable resources to identify a wide range of early-life stressors that influence individual biological, developmental and health trajectory variations related to the onset and evolution of non-communicable diseases (NCDs). Our goal is to establish the EU Child Cohort Network, a Europe-wide network of cohort studies that started in early-life, and translate our findings into policy recommendations for stratified and personalized prevention strategies.
The aim of Birthcohorts.net is to facilitate the exchange of knowledge and collaboration between cohorts and researchers. In addition, they would like to provide administrators, policy makers and other stakeholders with information about available cohort data on health and its determinants. You will find the list of birth cohorts that have provided information to this website in the Inventory of Birth Cohorts section together with key information such as number of participants and contact persons. If you click on the cohort name you will learn more about design and data. You can also use the search feature in order to search for cohorts with information on specific exposures, outcomes, biological samples, or health and development.
The inventory is not complete. Principal investigators of birth cohorts not yet included in the inventory are encouraged to register their birth cohort.