Dr. Bob McDonnell:

With reference to Deputy Kelleher's question about the rates and statistics, the numbers of neural tube defects around Europe are monitored by a large network of 40 or 50 congenital anomaly registries that monitor all kinds of birth defects, including neural tube defects, but they also monitor other birth defects. They do this on an ongoing, routine basis - it is regular surveillance. Some of these registries are regional registries within countries and some are national registries. For example, in Scandinavia there are national registries in Norway, Sweden and Finland which monitor, on a yearly basis, the numbers of all congenital birth defects.

The European network, of which there are three Irish HSE member registries, is called EUROCAT. The registries monitor all birth defects, including live and still births, and the terminations within Europe. The Irish registries measure the live and still births. The termination issue is a sensitive one and some mothers will choose to go abroad for a termination for some serious congenital anomalies. We do not have information on that. It is the same in the United States in that they have a network of registries that monitor all the birth defects as well. The statistics are reliable and will provide the actual numbers so we rely on the data from Europe and from ourselves.

In recent years, within the Irish situation, there have been some difficulties in gathering data, particularly in the east. There are three registries in Ireland - one in the east, one in the south-east, and one in the south. They monitor, between them, about 62% of births for congenital anomalies. They were operating fairly efficiently up until about three, four, or five years ago when data protection limitations began to cause some issues. These were due to be addressed in the Health Information Bill, which we have been expecting for some time, which would give cover that would allow the registry to operate efficiently so that there would be accurate data on neural tube defects and all other types of birth defect. At this stage, a couple of the registries are experiencing difficulty in gathering data on birth defects, including neural tube defects and that is why there have had to be special national studies to see what the number of neural tube defects were from 2009 to 2011. It is an issue that needs to be addressed.

The ideal situation would be that there would be a national registry within Ireland that would monitor all birth defects, including neural tube defects so one could see every year what the situation is rather than have to have a special survey in 2005 to 2006 and then another one in 2009 to 2011 and maybe another one later on. There is need for a national registry and this has been part of the recommendations of the folic acid committee that was set up, the Implementation Group on Folic Acid Fortification. In their recommendations, they suggested there should be national surveillance on neural tube defects. So the legislation to allow that to happen needs to be put in place. It is not actually a financial issue because the capacity is probably just about there to do it within the current system - it is a legislative issue. That needs to be done.