Dr. Jennifer Hoblyn:

We do not have any national studies on prevalence yet. We have a study from the North - we were asked about links with the North - where Professor Morrison did the only one. We are extrapolating by saying there are 750 people and at least 2,000 at risk. We do not know yet, but we have to start somewhere. We are slowly beginning with our fledgling service to reach out to the community. Ms Towey is aware of at least 700 people, perhaps 450 of whom are active on her casebook. Together, we need to come up with a solution for developing a network and a database, and we can have people access services from there or tie into research. That is very important.

We were asked about clusters. There are definitely pedigrees. As Professor Crown knows, we have a great deal of inflammatory bowel disease and many other diseases in terms of which Ireland is unique, according to population studies. With Huntington's, we do not know yet. We hear of pedigrees and of areas of the country, but we are getting referrals from all over the country at the moment. We have been working very closely with the team up North, where a new neurologist started in April who has an interest in Huntington's disease and who moved from the Mater here. The team in the North has two clinical nurse specialists and we at Bloomfield are training one clinical nurse specialist in Huntington's disease. These are sorely needed to reach out into the community to support and work in conjunction with HDAI to get a sense of the network, where we are and what we can develop together.