Dr. Sally Ann Lynch:

I will also give a small example, which is very important and wraps up with the issues of registries. Approximately five to six years ago a new CF drug came on the market. That new drug has ended up being cost-saving because people can attend school and work. At the time the Government bought the drug, it said that 5% of the population had the specific mutation that would allow them to be treated because the treatment is specific to a certain mutation. We did a paper last year and although the Government believed it was 5% based on UK data, in actual fact 15% of the Irish population carry that mutation. We would have done a different deal and have received a cheaper rate if we had our data. That goes back to registries. We may be talking about everything as being rare but often we find that if we simply get the data and the infrastructure to simply count and have a registry, there is a greater number of patients and we will then get a cheaper drug. There are fundamental infrastructure issues here and we could have bought that CF drug a great deal cheaper because there are 15% of people with that specific CF mutation in Ireland.