Ms Vicky McGrath:

Once a very good genetic screening or testing system has been established, the next step would involve getting registries in place.

This is where the technology and pharmaceutical sectors can come together and help us to build these types of systems. Clearly, we are all a little bit wary of electronic information and electronic data at present but it is the future and we cannot pretend it is not going to happen. We have to persist with it. This will then allow us to understand where people are living and what opportunities might be available for people with various rare conditions and genetic diagnoses. We rely on the pharmaceutical industry. Even today, the pharmaceutical sector in particularly has been quite involved in establishing some of the registries we have in the country. It does follow-on testing and in phase 4, once a product has been approved, they monitor patients on an ongoing basis. It is happening today in a very piecemeal fashion in this country. It is about getting joined-up thinking. This is where a rare disease plan would give us an opportunity to provide this joined up thinking and put it all together to make sure we all benefit from the resources, knowledge, skills and expertise available in the country.