Why the EU is good for our health
Eurocat, a European network of registries for the surveillance of congenital anomalies, helps paint a comprehensive picture of the threats to health of newborns throughout the EU and Ireland, writes JOANNE HUNT
IT’S EASY to forget that membership of the European Union might actually be good for our health.
With an average of 5.4 million births in the EU’s 27 member countries each year, you might not know that the EU has for over 30 years been surveying congenital anomalies and birth defects across its population.
Given that the majority of congenital anomalies have an occurrence of just five out of 10,000 live births, many are classified as rare diseases. That number may seem small, but it translates into approximately 246,000 people with rare diseases throughout the EU’s 27 member countries.
So while the families of children with rare diseases navigate a lonely course, it might bring some comfort to know that data that can help them is in fact all collated and analysed in Belfast.
Founded in 1979, Eurocat, a European network of population-based registries for the surveillance of congenital anomalies, records information on major congenital and chromosomal anomalies in live births, still births and where a pregnancy is terminated because of a foetal anomaly.
“There are about 40 registries of congenital anomalies and birth defects across Europe,” according to the University of Ulster’s Prof Helen Dolk, project leader of Eurocat.
“The information that each registry collects about each baby is sent to us here at the central registry in Belfast and we analyse it.”
The benefit to countries with a population as small as ours is that data about Irish births can be used in conjunction with that of larger EU states to paint a more comprehensive picture of the threats to health of newborns throughout the EU.
The analysis of rates of babies born with neural tube defects such as spina bifida is one example.
Tracking whether instances of spina bifida in babies born in Europe decreased following high-profile campaigns to take folic acid, Eurocat found that they are not actually having much success.
“There is a fair level of knowledge among women that folic acid supplementation is good in pregnancy and can prevent spina bifida, but the knowledge that it needs to start pre-conceptually is not really there – so women may start to take folic acid but they start too late,” Prof Dolk said.
“Our work in the registry has been to show that despite the fact we’ve got the means to prevent neural tube defects, we’re not actually having much success. There are signs in the past five years that rates of neural tube defects have come down a little bit but not as much as they could.”
When it comes to Down syndrome, Prof Dolk said rates in Europe had gone up because of increasing maternal age.
“Ireland itself sticks out a little in not having terminations of pregnancy – there would be many more children born in Ireland with Down syndrome for example than in many other European countries.”
The Europe-wide registries also look at the effect of medication taken during pregnancy on the health of the child.
“We’re looking at the risks relating to anti-epileptic medication exposure in order to give women better advice on which anti-epileptic medications carry less risk – that’s an area where it’s well known there are problems.
“It requires a European registry to get enough data together to look at any of this so we’ll be looking at the effect of anti-depressants and anti-diabetes in the near future too.”
Prof Dolk said that data showed there had been a small decrease in rates of congenital heart disease, although Eurocat is not yet quite sure why, but rates of gastroschisis, an intestinal defect in babies, are on the way up.
“Gastroschisis is associated with young child-bearing age, lower socio-economic status, smoking, recreational drug use and low BMI – that would suggest poor socio-economic status and poor health – that’s been increasing particularly in the UK but also across Europe.”
She said a number of the European registries had also combined to look at issues like the possible risks to residents living near landfill sites.
With three registries in Ireland gathering data in Dublin, the southeast, and Cork and Kerry, data from about 60 per cent of births in the Republic is shared with Eurocat. Prof Dolk said while this was “a fairly high coverage”, Norway, Sweden, Finland and Malta gathered data on 100 per cent of births.
“It depends on the resources available in each country,” she said, “but Eurocat’s philosophy is that it’s better to collect high quality data in one area than poor quality data across the whole country.”
The information gathered, she stressed, was anonymous and Eurocat does not collect any identifying information. Irish parents, however, are not asked for their permission for the anonymous data to be collected.
“In very few countries is the parent asked permission. Where it’s been tried, it generally hasn’t worked and it’s meant that reporting has gone down, not because parents have refused but because it’s been difficult to contact parents.”
Eurocat is just a part of what the EU is doing to tackle rare diseases and Ireland, along with all member states, has been tasked with developing a national strategy for rare diseases by 2013.
The Irish Genetic and Rare Disorders Organisation (GRDO) will be working with patient groups here to ensure the Department of Health’s plan will include fair and equitable access to treatments for everyone with a rare disease.