Summary
Austria - Styria
Belgium - Antwerp, Hainaut
Croatia - Zagreb
Czech Republic
Denmark - Odense
Finland
France - French West Indies, Ile de la Reunion, Auvergne, Paris, Rhone-Alpes, Strasbourg
Germany - Mainz, Saxony-Anhalt
Hungary
Ireland - Cork & Kerry, Dublin, SE Ireland
Italy - Campania, Emilia Romagna, Sicily, Tuscany
Malta
Netherlands - Northern Netherlands
Norway
Poland - Wielkopolska, remainder of Poland
Portugal - South Portugal
Spain - Barcelona, Basque Country, Spain hospital network, Valencia
Switzerland – Vaud
Ukraine - Ukraine, OMNI-Net
United Kingdom – East Midlands & South Yorkshire, Northern England, South West England, Thames Valley, Wales, Wessex
EUROCAT is a network of population-based registries for the epidemiologic surveillance of congenital anomalies, established in 1979 by Directorate General XII (Science Research and Development). It has expanded to 43 registries in 23 countries, covering more than 1.7 million births per year in Europe (29% of the population). The EUROCAT database contains 431,048 anonymised cases among livebirths, fetal deaths from 20 weeks gestation, and terminations of pregnancy for fetal anomaly. The use of multiple source registries, ascertaining terminations of pregnancy as well as births, enables collection of standardised data concerning the baby, diagnosis, mother, and father. Prevalence data on 89 types of congenital anomaly collated using the database are available on the website: http://www.eurocat-network.eu/accessprevalencedata/prevalencetables. This information is updated twice a year.
Objectives of the EUROCAT database are to:
- Provide essential epidemiologic information on congenital anomalies in Europe;
- Facilitate the early warning of new teratogenic exposures;
- Evaluate the effectiveness of primary prevention;
- Assess the impact of developments in prenatal screening;
- Act as an information and resource center for the population, health professionals, and managers regarding clusters or exposures or risk factors of concern;
- 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; and
- Act as a catalyst for the setting up of registries throughout Europe collecting comparable, standardised data.
Strengths of the database include pooling and comparison of data on congenital anomalies, some of which are rare events.
A limitation of the database is that not all registries can collect complete information on all of the 80 EUROCAT variables – these registries are advised to restrict data collection to the variables for which they have complete information.
The EUROCAT database is based at EUROCAT Central Registry, which coordinates and analyses data from 43 EUROCAT registries of congenital anomalies. Information on the full EUROCAT dataset is available in EUROCAT Guide 1.3http://www.eurocat-network.eu/aboutus/datacollection/guidelinesforregistration/guide1_3instructionmanual
(Multiple source ascertainment, including hospital records, cytogenetic laboratories, and pathology departments. See EUROCAT member registries for information on sources of ascertainment for each registry: http://www.eurocat-network.eu/aboutus/memberregistries)
(Data are transmitted to EUROCAT Central Registry twice a year - in February and in October. The data are verified by the registries before being uploaded to the EUROCAT website tables.)
(Multiple source ascertainment, including hospital records, cytogenetic laboratories, and pathology departments. See EUROCAT member registries for information on sources of ascertainment for each registry: http://www.eurocat-network.eu/aboutus/memberregistries)
Data are available since 1980. Information on data transmission and annual births per registry is available at: http://www.eurocat-network.eu/aboutus/memberregistries
(Neonates with a congenital anomaly)
(The EUROCAT database is updated twice a year;
This profile was last updated for the B.R.I.D.G.E. TO DATA on October 24, 2017.)
Population Dynamics
(The total birth population covered in the whole database from 1980 to 2015 is approximately 14,376,920. Total number of births covered in the registry for the year 2012 is 347,707.)
'(The registry contains 349,931 cases of congenital anomalies per 10,000 births for the years 1980-2015 for full member registries, and 353,022 per 10,000 birth for associate member registries)
(The registry contains 21,012 cases of congenital anomalies per 10,000 births for the years 2014-2015 for full member registries, and 3,804 per 10,000 birth for associate member registries)
(Not applicable)
(Not applicable, as data are still being collected)
Demographic Data
(DOB of both mothers and offspring)
<18 years = 100%
>65 years = 0%
(While this refers to offspring only, 5,138 of the mothers were <18 years during the period of 1980-2009)
Males = 55%
Females = 42%
(Based on all congenital anomaly cases registered up to 2010)
Austria - Styria
Belgium - Antwerp, Hainaut
Croatia - Zagreb
Czech Republic
Denmark - Odense
Finland
France - French West Indies, Ile de la Reunion, Auvergne, Paris, Rhone-Alpes, Strasbourg
Germany - Mainz, Saxony-Anhalt
Hungary
Ireland - Cork & Kerry, Dublin, SE Ireland
Italy - Campania, Emilia Romagna, Sicily, Tuscany
Malta
Netherlands - Northern Netherlands
Norway
Poland - Wielkopolska, remainder of Poland
Portugal - South Portugal
Spain - Barcelona, Basque Country, Spain hospital network, Valencia
Switzerland – Vaud
Ukraine - Ukraine, OMNI-Net
United Kingdom – East Midlands & South Yorkshire, Northern England, South West England, Thames Valley, Wales, Wessex
(The format is dd/mm/yy. DOB is collected for both mothers and offspring.)
(DDMMYY, but only for live births. While this information is recorded only for offspring, EUROCAT member registries may be informed if a mother had died in childbirth and this may be recorded but no other details regarding a mother's death would be recorded. In the case of mothers, this information is not kept within the database, but the individual member registries can provide it.)
(This is available only for offspring, and for some EUROCAT member registries only. Again, the database can hold anonymised autopsy information, whereas death certificates would have to be accessed via individual member registries.)
Demographic data collected on mothers includes - socioeconomic status, health of mother, all pregnancy-related diagnoses (gestation period, malformations, number of pregnancies, etc.)
Physician & Practioner Info
Diagnoses/Signs & Symptoms
See Section 2.2.1b of EUROCAT Guide 1.3 http://www.eurocat-network.eu/aboutus/datacollection/guidelinesforregistration/guide1_3instructionmanual
(ICD 9 BPA - for older data only; now ICD-10 is used)
(1 syndrome and 8 malformation codes can be recorded)
All malformations and physical birth defects are recorded as part of diagnosis, in an analyzable format and sometimes with text
This information includes details regarding parents and child, as well as type of birth defect. Survival data can be collected up until 1 yr after birth (depends on registry), and diagnoses data also varies and in some cases can be up to 15 years depending on the registry. See Member Registry decriptions http://www.eurocat-network.eu/aboutus/memberregistries
(Only for mothers before or during pregnancy)
(Only for mothers before or during pregnancy)
Mother's information is collected during gestation period
Mother's information is collected during gestation period; however, this information is only available up until 2004 data.
Procedures
Depending on the subset registry; however, this data are only available for offsprings.
(For child only)
If related to diagnosis or procedure information from mother
Drug Information
Drug information is available for mothers only
These are mentioned in the "text" variable
Indicated by a "text" variable
Indicated by a "text" variable
(ICD-10-BPA)
Drug overdose or self-poisoning are recorded
Biobanks
Genetic-PGx Data
Economic Data
(Not applicable)
(Not applicable)
(Not applicable)
Validation & Linkage
EDMP functions are essential for the collection of accurate standardized data from all of the participating registries. Data validation routines enable data checks to be carried out locally, before transmission of the data to EUROCAT Central Registry.
The database holds only anonymised data, and so if a researcher had been given permission to use the data (either internally or externally in collaboration with a EUROCAT member) access to medical records, if needed, would have to be specifically and directly requested from individual EUROCAT member registries.
All individual EUROCAT member registry databases are linked via the EUROCAT Data Management Program (EDMP)
Administrative Data
Professor Helen Dolk (EUROCAT Project Leader)
Professor of Epidemiology & Health Services Research Institute of Nursing Research
Room 12L23
School of Nursing, University of Ultster
Jordanstown campus, Shore Road
Newtonabbey
Co. Antrim BT37 0QB
UNITED KINGDOM
Phone: +44 (0)28 90368540
E-mail: h.dolk@ulster.ac.uk
Dr. Rhonda Curran (EUROCAT Project Manager)
Institute of Nursing Research
Room 12L09
School of Nursing, University of Ultster
Jordanstown campus, Shore Road
Newtonabbey
Co. Antrim BT37 0QB
UNITED KINGDOM
Phone: +44 (0)28 90368067
E-mail: r.curran1@ulster.ac.uk
N/A
(Not applicable)
Public access to aggregated prevalence, perinatal mortality and prenatal detection data is provided through the EUROCAT website http://www.eurocat-network.eu/accessprevalencedata/prevalencetables and http://www.eurocat-network.eu/prenatalscreeninganddiagnosis/prenataldetectionrates.
Individual case data for research/analyses purposes can be accessed privately by EUROCAT members (who may be collaborating with nonEUROCAT members) through EUROCAT Central Registry, but they are still subject to the Requesting EUROCAT Data due process http://www.eurocat-network.eu/aboutus/requestingeurocatdata
(Released as a CSV file via email)
1. Dolk H, Wang H, Loane M, Morris J, Garne E, Addor MC, Arriola L, Bakker M, Barisic I, Doray B, Gatt M, Kallen K, Khoshnood B, Klungsoyr K, Lahesmaa-Korpinen AM, Latos-Bielenska A, Mejnartowicz JP, Nelen V, Neville A, O'Mahony M, Pierini A, Rißmann A, Tucker D, Wellesley D, Wiesel A, de Jong-van den Berg LT. Lamotrigine use in pregnancy and risk of orofacial cleft and other congenital anomalies. Neurology. 2016 May 3; 86(18):1716-25.
2. Bergman JE, Loane M, Vrijheid M, Pierini A, Nijman RJ, Addor MC, Barisic I, Béres J, Braz P, Budd J, Delaney V, Gatt M, Khoshnood B, Klungsøyr K, Martos C, Mullaney C, Nelen V, Neville AJ, O'Mahony M, Queisser-Luft A, Randrianaivo H, Rissmann A, Rounding C, Tucker D, Wellesley D, Zymak-Zakutnia N, Bakker MK, de Walle HE. Epidemiology of hypospadias in Europe: a registry-based study. World J Urol. 2015 Dec; 33(12):2159-67.
3. Luteijn JM, Addor MC, Arriola L, Bianchi F, Garne E, Khoshnood B, Nelen V, Neville A, Queisser-Luft A, Rankin J, Rounding C, Verellen-Dumoulin C, de Walle H, Wellesley D, Wreyford B, Yevtushok L, de Jong-van den Berg L, Morris J, Dolk H. The Association of H1N1 Pandemic Influenza with Congenital Anomaly Prevalence in Europe: An Ecological Time Series Study. Epidemiology. 2015 Nov; 26(6):853-61.
4. Dolk H, Loane M, Teljeur C, Densem J, Greenlees R, McCullough N, Morris J, Nelen V, Bianchi F, Kelly A. Detection and investigation of temporal clusters of congenital anomaly in Europe: seven years of experience of the EUROCAT surveillance system. Eur J Epidemiol. 2015 Nov; 30(11):1153-64.
5. Luteijn JM, Addor MC, Arriola L, Bianchi F, Garne E, Khoshnood B, Nelen V, Neville A, Queisser-Luft A, Rankin J, Rounding C, Verellen-Dumoulin C, de Walle H, Wellesley D, Wreyford B, Yevtushok L, de Jong-van den Berg L, Morris J, Dolk H. The Association of H1N1 Pandemic Influenza with Congenital Anomaly Prevalence in Europe: An Ecological Time Series Study. Epidemiology. 2015 Nov; 26(6):853-61.
6. Dolk H, Loane M, Teljeur C, Densem J, Greenlees R, McCullough N, Morris J, Nelen V, Bianchi F, Kelly A. Detection and investigation of temporal clusters of congenital anomaly in Europe: seven years of experience of the EUROCAT surveillance system. Eur J Epidemiol. 2015 Nov; 30(11):1153-64.
7. Wemakor A, Casson K, Garne E, Bakker M, Addor MC, Arriola L, Gatt M, Khoshnood B, Klungsoyr K, Nelen V, O'Mahoney M, Pierini A, Rissmann A, Tucker D, Boyle B, de Jong-van den Berg L, Dolk H. Selective serotonin reuptake inhibitor antidepressant use in first trimester pregnancy and risk of specific congenital anomalies: a European register-based study. Eur J Epidemiol. 2015 Nov; 30(11):1187-98.
8. Barisic I, Boban L, Loane M, Garne E, Wellesley D, Calzolari E, Dolk H, Addor MC, Bergman JE, Braz P, Draper ES, Haeusler M, Khoshnood B, Klungsoyr K, Pierini A, Queisser-Luft A, Rankin J, Rissmann A, Verellen-Dumoulin C. Meckel-GruberSyndrome: a population-based study on prevalence, prenatal diagnosis, clinical features, and survival in Europe. Eur J Hum Genet. 2015 Jun; 23(6):746-52.
9.Taruscio D, Mantovani A, Carbone P, Barisic I, Bianchi F, Garne E, Nelen V,Neville AJ, Wellesley D, Dolk H. Primary prevention of congenital anomalies: recommendable, feasible and achievable. Public Health Genomics. 2015; 18(3):184-91.
10. Barisic I, Boban L, Greenlees R, Garne E, Wellesley D, Calzolari E, Addor MC, Arriola L, Bergman JE, Braz P, Budd JL, Gatt M, Haeusler M, Khoshnood B, Klungsoyr K, McDonnell B, Nelen V, Pierini A, Queisser-Wahrendorf A, Rankin J, Rissmann A, Rounding C, Tucker D, Verellen-Dumoulin C, Dolk H. Holt Oram syndrome: a registry-based study in Europe. Orphanet J Rare Dis. 2014 Oct 25; 9:156.
Database Contact
Professor Helen Dolk (EUROCAT Project Leader)
Professor of Epidemiology & Health Services Research Institute of Nursing Research
Room 12L23
School of Nursing, University of Ultster
Jordanstown campus, Shore Road
Newtonabbey
Co. Antrim BT37 0QB
UNITED KINGDOM
Phone: +44 (0)28 90368540
E-mail: h.dolk@ulster.ac.uk
Dr. Rhonda Curran (EUROCAT Project Manager)
Institute of Nursing Research
Room 12L09
School of Nursing, University of Ultster
Jordanstown campus, Shore Road
Newtonabbey
Co. Antrim BT37 0QB
UNITED KINGDOM
Phone: +44 (0)28 90368067
E-mail: r.curran1@ulster.ac.uk
Literature References
1. Dolk H, Wang H, Loane M, Morris J, Garne E, Addor MC, Arriola L, Bakker M, Barisic I, Doray B, Gatt M, Kallen K, Khoshnood B, Klungsoyr K, Lahesmaa-Korpinen AM, Latos-Bielenska A, Mejnartowicz JP, Nelen V, Neville A, O'Mahony M, Pierini A, Rißmann A, Tucker D, Wellesley D, Wiesel A, de Jong-van den Berg LT. Lamotrigine use in pregnancy and risk of orofacial cleft and other congenital anomalies. Neurology. 2016 May 3; 86(18):1716-25.
2. Bergman JE, Loane M, Vrijheid M, Pierini A, Nijman RJ, Addor MC, Barisic I, Béres J, Braz P, Budd J, Delaney V, Gatt M, Khoshnood B, Klungsøyr K, Martos C, Mullaney C, Nelen V, Neville AJ, O'Mahony M, Queisser-Luft A, Randrianaivo H, Rissmann A, Rounding C, Tucker D, Wellesley D, Zymak-Zakutnia N, Bakker MK, de Walle HE. Epidemiology of hypospadias in Europe: a registry-based study. World J Urol. 2015 Dec; 33(12):2159-67.
3. Luteijn JM, Addor MC, Arriola L, Bianchi F, Garne E, Khoshnood B, Nelen V, Neville A, Queisser-Luft A, Rankin J, Rounding C, Verellen-Dumoulin C, de Walle H, Wellesley D, Wreyford B, Yevtushok L, de Jong-van den Berg L, Morris J, Dolk H. The Association of H1N1 Pandemic Influenza with Congenital Anomaly Prevalence in Europe: An Ecological Time Series Study. Epidemiology. 2015 Nov; 26(6):853-61.
4. Dolk H, Loane M, Teljeur C, Densem J, Greenlees R, McCullough N, Morris J, Nelen V, Bianchi F, Kelly A. Detection and investigation of temporal clusters of congenital anomaly in Europe: seven years of experience of the EUROCAT surveillance system. Eur J Epidemiol. 2015 Nov; 30(11):1153-64.
5. Luteijn JM, Addor MC, Arriola L, Bianchi F, Garne E, Khoshnood B, Nelen V, Neville A, Queisser-Luft A, Rankin J, Rounding C, Verellen-Dumoulin C, de Walle H, Wellesley D, Wreyford B, Yevtushok L, de Jong-van den Berg L, Morris J, Dolk H. The Association of H1N1 Pandemic Influenza with Congenital Anomaly Prevalence in Europe: An Ecological Time Series Study. Epidemiology. 2015 Nov; 26(6):853-61.
6. Dolk H, Loane M, Teljeur C, Densem J, Greenlees R, McCullough N, Morris J, Nelen V, Bianchi F, Kelly A. Detection and investigation of temporal clusters of congenital anomaly in Europe: seven years of experience of the EUROCAT surveillance system. Eur J Epidemiol. 2015 Nov; 30(11):1153-64.
7. Wemakor A, Casson K, Garne E, Bakker M, Addor MC, Arriola L, Gatt M, Khoshnood B, Klungsoyr K, Nelen V, O'Mahoney M, Pierini A, Rissmann A, Tucker D, Boyle B, de Jong-van den Berg L, Dolk H. Selective serotonin reuptake inhibitor antidepressant use in first trimester pregnancy and risk of specific congenital anomalies: a European register-based study. Eur J Epidemiol. 2015 Nov; 30(11):1187-98.
8. Barisic I, Boban L, Loane M, Garne E, Wellesley D, Calzolari E, Dolk H, Addor MC, Bergman JE, Braz P, Draper ES, Haeusler M, Khoshnood B, Klungsoyr K, Pierini A, Queisser-Luft A, Rankin J, Rissmann A, Verellen-Dumoulin C. Meckel-GruberSyndrome: a population-based study on prevalence, prenatal diagnosis, clinical features, and survival in Europe. Eur J Hum Genet. 2015 Jun; 23(6):746-52.
9.Taruscio D, Mantovani A, Carbone P, Barisic I, Bianchi F, Garne E, Nelen V,Neville AJ, Wellesley D, Dolk H. Primary prevention of congenital anomalies: recommendable, feasible and achievable. Public Health Genomics. 2015; 18(3):184-91.
10. Barisic I, Boban L, Greenlees R, Garne E, Wellesley D, Calzolari E, Addor MC, Arriola L, Bergman JE, Braz P, Budd JL, Gatt M, Haeusler M, Khoshnood B, Klungsoyr K, McDonnell B, Nelen V, Pierini A, Queisser-Wahrendorf A, Rankin J, Rissmann A, Rounding C, Tucker D, Verellen-Dumoulin C, Dolk H. Holt Oram syndrome: a registry-based study in Europe. Orphanet J Rare Dis. 2014 Oct 25; 9:156.