Number of births with Down's syndrome

Armenia

Source of data: National Health Information Analytic Center, Ministry of Health of the Republic of
Armenia www.healthinfo.am. Data collected annually, reference period: 31 December.

Austria

Source: Statistics Austria, Vital Statistics. Includes livebirths only.
Data up to 2001 used ICD-9 coding.
Data from 2002 used ICD-10 coding.

Belarus

January 2001: Morbidity of childres age 0-1 year has been registered since 1997. Before that
information on morbidity of children age 0-15 was available.

Belgium

Source: EUROCAT (http://www.eurocat-network.eu/): Registries of Hainaut-Namur (1980-2008) and
Antwerp (1989-2009). Remark: The number was calculated by applying an average of the prevalences
(by 1000 births) of both registries to the total number of births in the country. It is currently
however unclear to what extent the regions of Hainaut, Namur and Antwerp are representative for the
rest of Belgium.

Bosnia and Herzegovina

Public Health Institute - Annual hospital report.

Croatia

November 2002: The data are available only from maternity wards. Source: Croatian National Institute
of Public Health.

Cyprus

No data are available

Czechia

Source: Institute of Health Information and Statistics of CR (IHIS CR). Please check Country
specific sources and methods of parent indicator.
Breaks in time series: 1994 (increase of the number of observed congenital malformations), 2000
(another information source was added)

Denmark

Source: From 1997: The Medical Birth Registry, The Danish Health Data Authority

Estonia

Source: annual reporting, 1990-1995 maternity hospital data (aged 0-6 days). From 1996 new cases of
congenital malformations diagnosed within first year of life, National Institute for Health
Development. From 1999 confirmed cases Tartu University Hospital, Genetics Centre.
The low number in year 2013 is because the overall number of foetuses with Down syndrome has been
decreasing steadily over the last years (based on the number of cases diagnosed prenatally, and the
proportion of these from all cases of Down syndrome. Also the number of live births has been
decreasing.

Finland

Source: Register on Congenital Malformation, THL (National Institute for Health and Welfare).

France

Data are not available.

Germany

Source: Federal Statistical Office, Hospital statistics - diagnostic data of the hospital patients,
Fachserie 12, Reihe 6.2.1.
http://www.destatis.de
Deviation of definition: The data includes the number of infants treated as in-patients due to
abnormalities in the month of birth (ICD-Pos. Q90 Down-syndrome). Infants repeatedly treated as
in-patients in the month of birth due to a congenital malformation in hospital, will also be counted
several times.

Greece

Data are not available.

Hungary

Source: VRONY (National Register for Congenital Anomalies).

Iceland

Source: The Icelandic Birth Registration.

Ireland

Data are not available.

Israel

Source: Department of Community Genetics and Health Information Division, Ministry of Health.

Italy

Source from 2003: Ministry of Health, Health Information System, Delivery Certificates Database.
Coverage in 2003: 84% of deliveries, recorded in National Database of Hospital Discharges. In 2004:
86% of the deliveries recorded in the National Database of Hospital Discharges. Coverage in 2005:
92% of deliveries recorded in National Database of Hospital Discharges in the same year. Coverage in
2006: 92.9% of deliveries, recorded in National Database of Hospital Discharges in the same year.
Coverage in 2007: 93.0% of deliveries, recorded in National Database of Hospital Discharges in the
same year. Coverage in 2008: 96.6% of deliveries, recorded in National Database of Hospital
Discharges in the same year. Coverage in 2009: 98.2% of deliveries, recorded in National Database of
Hospital Discharges in the same year. Coverage in 2010: 98,8% of deliveries, recorded in National
Database of Hospital Discharges in the same year. Coverage in 2011: 98.8% of deliveries, recorded in
National Database of Hospital Discharges in the same year. Coverage in 2012: 99.9% of deliveries,
recorded in National Database of Hospital Discharges in the same year. Coverage in 2013: 100.3% of
deliveries, recorded in National Database of Hospital Discharges in the same year. The number of
live births registered in the Delivery Certificates Database in 2013 is: 510.659.

Latvia

Source before 2000: Register of Congenital Anomalies (only genetically approved live births, Q90).
Source from 2000: Register of Congenital Anomalies (only genetically approved live births Q90) and
Death Causes Database (stillbirths Q90). Abortions are not included.

Lithuania

Source: Up to 2001: Medical Genetics Centre. From 2002: Medical Birth Register, HI HIC. Coverage:
Newborns with Down syndrome.

Malta

Source: Department of Health Information and Research (Malta National Congenital Anomalies Register)

Montenegro

Only malformations diagnosed at birth are included.

Netherlands

TNO Quality of Life. The Netherlands Perinatal Registry. See 045800. Covers Q90-99.

Norway

Source of data: Until 1998 data source was gynaecological/birth departments. Since 1999 data from
paediatric departments are also included.

Poland

Data are not available.

Portugal

Source of data: Ministry of Health - National Health Institute (INSA), Annual Report. Coverage:
National

Romania

Source: number of hospital admissions for patients aged <1 with Down syndrome.

Serbia

Source of data: Institute of Public Health of Serbia, Birth registration report. Data includes
congenital malformations diagnosed (ICD10: Q90) after birth and before discharge of newborn from the
maternity ward.

Slovakia

Source. National Health Information Centre (NIC)
Note: In year 2012, reporting obligations for congenital anomalies and Down syndrome reporting were
extended to child and adolescent paediatricians. In year 2011 and earlier only neonatologists were
required to report those conditions.
Does not include children who have Downs Syndrome in conjunction with other congenital defects.
Selection of data - residents, respectively patients with permanent address in Slovakia (including
the homeless, residents without registration of permanent address, foreigners with permanent
address in Slovakia.

Slovenia

Source of data: National Institute of Public Health, Slovenia (NIJZ)

Spain

Source: Estudio Colaborativo Espanol de Malformaciones Congenitas (E.C.E.M.C.) that covers 98 of all
hospitals and 25% of all births.
Proportion of births (live and dead) with Downs syndrome / 1000 births (live and dead).

Sweden

Source: The National Board of Health and Welfare (NBHW)
National Patient Register, NBHW

Switzerland

Based on hospital discharge data. The data take into account the main, but also the supplementary
diagnosis. Source of data: FSO Federal Statistical Office, Neuchatel; Medical Statistics of
Hospitals; yearly census.
Coverage: Full coverage of hospitals; sufficient (nearly full) coverage of inpatient and day cases
since 2002. Due to a modification of the legislation, day cases are not collected in 2009 anymore.
Estimation method: Discharges without a valid ICD-code are not accounted for (negligible).
Break in time series: The gradual change of diagnosis classification since 2008 from ICD-10 WHO to
ICD-10 GM (German Modification) may lead to breaks for some categories.

Türkiye

No data are available.

Turkmenistan

Data are not available.

Ukraine

Source: Centre of Health Statistics, Ministry of Health.

United Kingdom

Coverage: Data until 1987 refer to England and Wales only. Data from 1988 refer to Great Britain
only. 2009 onwards ? Data is no longer available as ONS is no longer producing the source
publication.
Scotland - ISD has been modifying the way that record linkage is performed and has recently
implemented a technique which relies more heavily on the use of Community Health Index (CHI) numbers
and less heavily on the previous approach of probability matching. Inevitably, this has changed the
number of individuals identified with various conditions. There has, therefore, been some revision
of the congenital anomaly numbers reported from 2007 onwards?. From 2011, data is no longer
available.