Dr. Rosemarie Watson:

Research has been done in that area but it has been somewhat hampered by the sample sizes being too small to look at costings or it has bunched everything together, with the simplex and all the other subtypes bunched together, as opposed to being costed individually. It works out that the direct cost for a patient with the more severe form of recessive dystrophic EB is about €79,000 a year, which equates pretty well with the UK figures, although we are not sure that these studies are accurate for the reasons I mentioned. If we count direct and indirect costs, some research has been done on that in Ireland by Dr. Darragh Flannery, who estimated that direct and indirect costs are about €130,000 a year. However, that is spread over everybody.