European Registration of Congenital Anomalies (EUROCAT) (United Kingdom)

Summary

Coordinating Country

United Kingdom

Region

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

Brief Database Description

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.

Database Type

Registry

- Birth defect registry

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

Database Source

Medical Records

(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)

Frequency of Data Collection

Other

(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.)

Frequency of Data Update

Other

Years Covered

1980 - Present

Data are available since 1980. Information on data transmission and annual births per registry is available at: http://www.eurocat-network.eu/aboutus/memberregistries

Population Type

Neonates

Patient Type

Inpatient and Outpatient

(Neonates with a congenital anomaly)

Date of Last Update

Ongoing

(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

Database Population Size

5 - 20 Million

(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.)

Active Population Size

5 - 20 Million

'(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)

Annual Change in Population

~24,000 cases per 10,000 births

(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)

Sample Weights - Extrapolation Factors

N/A

(Not applicable)

Final Population Size

N/A

(Not applicable, as data are still being collected)

Demographic Data

Age of Patients at Data Collection

Yes

(DOB of both mothers and offspring)

Approximate Percentage of Participants <18 years and those >65 years

<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)

Gender Data

Yes

Percentage of Males/Females

Males = 55%
Females = 42%

(Based on all congenital anomaly cases registered up to 2010)

Ethnicity / Race Data

Geographic Location

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

Date of Birth Recorded

Yes

(The format is dd/mm/yy. DOB is collected for both mothers and offspring.)

Death Recorded

Yes

(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.)

Availability of death certificate / autopsy information

Yes

(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.)

Other Demographic Data

Yes

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

Physician ID

Physician Specialty

Pharmacy ID

Diagnoses/Signs & Symptoms

Diagnosis Data

Yes

See Section 2.2.1b of EUROCAT Guide 1.3 http://www.eurocat-network.eu/aboutus/datacollection/guidelinesforregistration/guide1_3instructionmanual

Diagnoses Coded

ICD-10

(ICD 9 BPA - for older data only; now ICD-10 is used)

Diagnoses: Date Parameters

1980 - Present

Diagnoses: Maximum Number of Codes Allowed

(1 syndrome and 8 malformation codes can be recorded)

Physical Examination Findings

Yes

All malformations and physical birth defects are recorded as part of diagnosis, in an analyzable format and sometimes with text

Birth Defect Data

Yes

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

Cancer Data

Yes

(Only for mothers before or during pregnancy)

Infectious Disease Data

Yes

(Only for mothers before or during pregnancy)

Environmental Exposures

Yes

Mother's information is collected during gestation period

Behavioral Data Elements

Yes

Mother's information is collected during gestation period; however, this information is only available up until 2004 data.

Procedures

Procedure Data

Yes

Depending on the subset registry; however, this data are only available for offsprings.

Procedures Coded

ICD-10

Number of Procedures Coded

Unlimited

(For child only)

Procedure Date Parameters

1980 - Present

Laboratory Information

Yes

If related to diagnosis or procedure information from mother

Drug Information

Drug Data

Yes

Drug information is available for mothers only

Drug Date Parameters

1980 - Present

Drug Regimen & Route

Yes

These are mentioned in the "text" variable

Drug Manufacturer

Drug Dosage

Yes

Indicated by a "text" variable

Drug Days Supply

Yes

Indicated by a "text" variable

Drug Coding System: Maximum Number

Drug Coding System: Primary

ATC

Drug Coding System: Other

Other

(ICD-10-BPA)

Drug Generic Name

Drug Additional Information

Yes

Drug overdose or self-poisoning are recorded

Biobanks

Biobank Type

Human Specimen

Blood Type

Biomarkers

Patient ID

Number of Samples

Frequency of Sample Collection

Pre-diagnostic Sample Collection

Method of Sample Collection

Age at Sample Collection

Date of Sample Collection

Reason for Sample Collection

Method of Sample Storage

Length of Sample Storage

Pathology

DNA Isolation

RNA Isolation

Cell Culture

Genetic Testing

Access for Research: Specimens

Access for Research: Genetic Data

Access for Research: Epidemiologic Data

Quality Assurance Procedures

Family History

Medical History

Biobank Linkage

Genetic-PGx Data

Type of Genetic Database

Source of Genetic Data

Specimen Genotyped

Tissue Form

Genetic Template

Gene-Drug Response

Gene-Disease Relationship

Gene-Health Outcome Relationship

Gene-Environment Response

Method of Imputing Genetic Data

Genetic Variant Identification

Genetic Data Level

Genotyping Method

Method of Genetic Variant Filtering

Haplotypes

Haplogroups

Variable Number of Tandem Repeats (VNTR)

Single Nucleotide Polymorphisms (SNPs)

Variant Type

Variant Class

Mutation Indicated

Position

Amino Acid Change

Genotype / Polymorphism

Allele Frequency

Linkage Disequilibrium (r²)

Noncarriers Indicated

Association Statistics

Genetic Relatedness Pairing

Data Sharing: Genetic Data

Access for Research

Genetic Data Linkage

Description of Genetic Data Linkage

Economic Data

Cost Data

Cost Denomination

N/A

(Not applicable)

Type of Cost Data

N/A

(Not applicable)

Surrogate Cost Data Link

Description of Surrogate Link

N/A

(Not applicable)

Validation & Linkage

Data Validation Against Original Source

Yes

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.

Access to Medical Records

Yes

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.

Linkage to Other Databases

Yes

Brief Description of Linkage Capabilities

All individual EUROCAT member registry databases are linked via the EUROCAT Data Management Program (EDMP)

Administrative Data

Database Contact 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

Website

http://www.eurocat-network.eu/aboutus/whatiseurocat/whatiseurocat

Alternate Contact

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

Source of Database Funding

Government

Sponsoring Government Agency

European Commission's Directorate General for Health and Consumers EU Public Health Programme 2008-2013

Sponsoring Pharmaceutical Manufacturer

N/A

(Not applicable)

Database Usage Restrictions

Public & Private Access

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

Charge for Database Usage

Data Media Format

Other

(Released as a CSV file via email)

Number of Publications Using Database

>800

References of Studies Using/Describing Database

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.

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