EU Science Hub

Down syndrome in Europe – has the disorder epidemiology changed over the last quarter-century?

The World Down Syndrome Day is celebrated on 21 March
The World Down Syndrome Day is celebrated on 21 March
Mar 21 2019

Of the 5.2 million births in the European Union (EU) each year, approximately 104,000 (2.5%) will be born with congenital anomalies.

Down syndrome, a disorder caused by trisomy of chromosome 21, accounts for approximately 8 % of all congenital anomalies.

To mark the occasion of World Down Syndrome Day, the JRC publishes a report describing the epidemiology of Down syndrome in Europe over the last 25 years.

What is Down syndrome

Down syndrome is a disorder caused when an error in cell division results in an extra chromosome 21 that becomes present in all cells in the body.

This additional genetic material causes the characteristics associated with Down syndrome.

There can be impairments in cognitive ability and physical growth, mild to moderate developmental disabilities and a higher risk of some health problems, including heart defects, as well as problems with the digestive system and limbs.

Growing number of Down syndrome births

Down syndrome occurs in people of all races and socio-economic status, but the probability of giving birth to a child with Down syndrome increases significantly for older women (above 35 years).  

With many couples postponing parenting until later in life, the report confirms that there is a rise in the prevalence of Down syndrome, from an average of 16 (for 10 000 births) in 1990 to 23 in 2015.

There is, however, a large variation in the maternal age distribution in European regions.

National prenatal screening programmes for Down syndrome have been established in many European coun­tries and their respective methodologies have changed significantly in the last two decades.

As a consequence, the prenatal detection of Down syndrome has increased from 49 % in 2005 to about 70 % in 2015.

How disease registries can help shaping health policies across Europe

In the framework of the European Platform on Rare Diseases Registration, the JRC operates the Central Registry of EUROCAT, a network of population-based registries for the epidemiological surveillance of congenital anomalies covering about 1/3 of all European births (approx. 1.7 million births/year).

The EUROCAT Central Database is annually updated and contains about 800.000 cases of congenital anomalies, including Down syndrome.

Prevalence of Down syndrome in live born children is an important public health indicator which has been developed by EUROCAT and which has both socio-economic and policy implications on health service requirements.

This indicator reflects the combined effect of delayed childbearing with policies on prenatal screening and termination of pregnancy.

The information presented in the report contributes to understanding the epidemiology of Down syndrome across Europe, including prevalence, trends and prenatal detection.

Potentially it can help facilitate tailor-made healthcare policies and services for people affected with Down syndrome.

World Down Syndrome Day (WDSD) 2019: Leave no one behind

The lead topic of this year's WDSD underlines the importance of giving all citizens with Down syndrome the opportunity to live a fulfilled life on a full and equal basis with others, in all aspects of society.

The EU promotes the social inclusion of people with Down Syndrome through the European Disability Strategy 2010-20, which aims at eliminating barriers linked to the accessibility, participation, employment, education, training, social protection and health of people affected by Down Syndrome.

Recently, the Commission took particularly into account their needs when elaborating the functional requirements set in the European Accessibility Act which aims at making various products and services accessible.

In the context of the Strategy, improving the quality of life of children born with Down syndrome or other congenital conditions has been a longstanding priority for the European Commission throughout the EU Framework Programmes for Research.

Over last 12 years, through FP7 and Horizon 2020, the EU has dedicated some € 70 million to research on intellectual disabilities through 61 projects including 9 focussing specifically on Down syndrome.

The European Parliament decides on the EU budget. You too can have a say.

Go and vote in the European Parliament elections in May 2019!

Find out what the EU is doing for people with disabilities and rare diseases:

Background

"EUROCAT – Surveillance of congenital anomalies in Europe: epidemiology of Down syndrome" is the latest publication in the  JRC Socio-economic regional microscope, a new series of short periodical publications which aims to open-up new areas of analysis, and present the stories which can only be told using regional socio-economic data.