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What is EUROCAT?

 

EUROCAT Overview

Congenital Anomalies and Public Health

The Objectives of EUROCAT

History and Funding

Why European Collaboration?

Why Register Congenital Anomalies?

How Can a Register be Used?

How Does EUROCAT Function?



EUROCAT Overview

  • A European network of population-based registries for the epidemiologic surveillance of congenital anomalies.

  • Started in 1979.

  • More than 1.7 million births surveyed per year in Europe. 

  • 39 active registries (33 full and 6 associate members) in 21 countries at 1.1.2017.

  • 29% of European birth population covered 

  • High quality multiple source registries, ascertaining terminations of pregnancy as well as births.  

 

EUROCAT MAP

 

 


Congenital Anomalies and Public Health

  • Structural defects (congenital malformations, deformations, disruptions and dysplasias) and chromosomal abnormalities. 

  • A major cause of infant mortality, childhood morbidity and long-term disability. 

  • A major cause of embryonic and fetal death. 

  • Among the leading causes of years of potential life lost. 

  • Carry a high burden to affected individuals, their families and the community in terms of quality of life, participation in the community and need for services.


The Objectives of EUROCAT

  • To provide essential epidemiologic information on congenital anomalies in Europe.

  • To facilitate the early warning of new teratogenic exposures. 

  • To evaluate the effectiveness of primary prevention. 

  • To assess the impact of developments in prenatal screening. 

  • To act as an information and resource center for the population, health professionals and managers regarding clusters or exposures or risk factors of concern. 

  • To provide a ready collaborative network and infrastructure for research related to the causes and prevention of congenital anomalies and the treatment and care of affected children. 

  • To act as a catalyst for the setting up of registries throughout Europe collecting comparable, standardised data.

 

History and Funding

  Project Leaders

  

  Josephine Weatherall 1978-1984

  Michel Lechat 1984-1996

  Segolene Ayme 1996-1999

  Helen Dolk 1999 to 2014

  From 1/1/2015 the Central Registry and the European-level coordination activities of

  the EUROCAT network were transferred to the European Commission's Joint Research

  Centre (JRC), Ispra, Italy  

  • Conceived in 1974, at a Workshop convened by the European Economic Community's Committee on Medicinal and Public Health Research to improve "the methodology of population studies throughout the Community". Congenital anomalies chosen as first topic for concerted action.
     

  • EUROCAT (acronym derived from its original name "European Concerted Action on Congenital Anomalies and Twins") established in 1979 by Directorate General XII (Science Research and development) as a prototype for European surveillance aiming to assess the feasibility of pooling data across national boundaries, in terms of standardization of definitions, diagnosis and terminology and confidentiality. Central Registry in Department of Epidemiology, Catholic University of Louvain, Brussels.
     

  • Funding transferred in 1991 to Directorate General V (Employment, Industrial Relations and Social Affairs, Health and Safety), to function as a service for the surveillance of congenital anomalies in Europe. Central Registry at Scientific Institute for Public Health, Brussels.
     

  • Maintained by registry subscriptions 1998-2000.  Central Registry moved briefly to London School of Hygiene and Tropical Medicine, UK 1999-2000.
     

  • European Funding re-established under the Programme of Community Action on Rare Diseases in 2000. 
     

  • Central Registry moves to University of Ulster, Northern Ireland, UK in 2000 where it remained until 2014.
     

  • Funded under EC DG Health Public Health Programmes since March 2004 (http://ec.europa.eu/health/ph_threats/non_com/rare_diseases_en.htm). 
     

  • Funded by the Public Health Programme 2008-2013 of the European Commission - Joint Action 2011-2013.
     

  • Funding was received from the European Union in the framework of the Health Programme (2008-2013) - Operating Grant 2014.

  • From 1/1/2015 the Central Registry and the European-level coordination activities of the EUROCAT network were transferred to the European Commission's Joint Research Centre (JRC), Ispra, Italy.  

     

 Why European Collaboration?

  • Pooling of data.  

  • Comparison of data.  

  • Sharing of expertise.  

  • Joint approach to European public health questions


Why Register Congenital Anomalies?

 

There are two main reasons why congenital anomaly registers are established: 

  1.  To facilitate the identification of teratogenic exposures. Ever since thalidomide and rubella (german measles) were discovered as powerful teratogens, registries have been set up to facilitate research and surveillance concerning environmental causes of congenital anomalies, and to give early warning of new teratogenic exposures. Registers are also used for genetic studies, and increasingly for research into the interaction of genetic and environmental factors in causing congenital anomalies. Congenital anomalies are registered not only for their intrinsic importance, but as indicators of other adverse pregnancy outcomes linked to teratogenic exposures such as spontaneous abortions and neurobehavioural outcomes that are not as amenable to surveillance.

  2. For the planning and evaluation of health services. This includes primary prevention strategies such as periconceptional folic acid supplementation to prevent neural tube defects and vaccination against rubella to prevent congenital rubella syndrome, so-called "secondary prevention" by prenatal screening and diagnosis, and tertiary prevention through paediatric, rehabilitative and other services. Population-based registries are a particularly powerful tool for the evaluation of health services, because they represent the experience of a whole community, not the outcomes of specialist units which may serve only a selected group of women or children, or which may have atypical human or financial resources. Many birth defect registries in Europe have been set up to provide a mechanism for the audit of prenatal screening practice. The registry can provide data on the proportion of cases of congenital anomaly diagnosed prenatally, the proportion of positive prenatal screening results which were confirmed as cases of congenital anomaly, and the proportion of prenatally diagnosed cases which led to termination of pregnancy, as well as related information about prenatal screening methods.

How Can a Register be Used?

Whether concerned with the identification of teratogenic exposures, or with planning and evaluation of health services, or both, registers can be used in two main ways:

  1. As a basis for surveillance using routinely collected data. Every register routinely collects a core of standard information on each malformed child, and a core of information (often more limited) on non-malformed children in the population.
     

  2. As a basis for special or ad-hoc studies, such as case-control studies, requiring further data collection. The presence of a register which has already done the work of identifying who in the population has a congenital anomaly, with details of diagnosis, can greatly facilitate the conduct of ad-hoc studies which seek to address specific hypotheses concerning teratogenic exposures or effectiveness of health services.

The decision as to which data should be included in the routine dataset of a registry, and which data should be collected only in ad-hoc studies is a difficult one. Each data item that is included in the routine dataset uses resources that must be balanced against other uses of those resources. Collection of incomplete and inaccurate data is generally a waste of resources. Depending on local circumstances, it may be justifiable for the registry to concentrate almost entirely on data about the baby and its diagnosis in its routine data collection, leaving most risk factor data for collection in ad-hoc studies. Some ad-hoc data collection will always be necessary to address new or more elaborate hypotheses. However, registers that do not record the identity of children for confidentiality reasons can experience difficulties in supporting ad-hoc studies effectively and efficiently.

In general, risk factor data must be present for both cases and controls (non-malformed children) in order to be interpretable. While all registers collect basic information about the number of births in their population by type of birth and maternal age, some registers in addition collect the same set of risk factor information on control babies as on case babies in their routine data collection. There are also useful approaches to analysing risk factor data among malformed cases only, where children with different malformations act as controls for each other in "proportionate" analyses (1). For example, specific associations between particular drugs and particular malformation types can be sought.

 

How does EUROCAT function?

  • Standard data concerning baby, diagnosis, mother and father (see Guide 1.4).
  • Common coding system for standard data (see Guide 1.4).
  • Standard computer data entry and validation programme available (see EUROCAT Data Management Program).  Program concenived and developed by EUROCAT network during the period 2000-2014.
  • Anonymous data transmitted to the Central Registry which collates the pooled database, and carries out surveillance and research using the common database.
  • Annual meetings of Registry Leaders to discuss data standardisation, surveillance and research.
  • Steering Committee of elected Registry Leaders and Work Package Leaders.
  • Prevalence data tables updated bi-annually with prevalence rates of 96 congenital anomaly subgroups in each Registry, with the number of cases reported among livebirths, stillbirths and terminations of pregnancy following prenatal diagnosis and trends in prevalence since 1980 (see Prevalence Data Tables).  Prevalence tables cnceived and developed by EUROCAT network 2000-2014.
  • Extracts of the common database can be requested by researchers, by submitting a research protocol for approval (see Requesting EUROCAT data).