AN ACCURATE picture of the life expectancy of people with cystic fibrosis in the Republic will be available for the first time when data in relation to all those living with the condition is included on a national register.
While anecdotal evidence suggests that life-expectancy rates for people with cystic fibrosis in the Republic are low compared to in other countries - many of those with the condition die in their 20s - a full statistical analysis of the figures has not been completed to date to provide accurate life-expectancy data
The register, which has been collecting data for the past few years, is now 84 per cent complete, and its chief executive, Linda Foley, said yesterday she hoped it would be as near as possible to completion by the end of next month or early June. "We will be able to work out survival curves once we get 95 per cent of people on it."
However, the actual statistical analysis is a complex task, and it could be nine months before this part of the project is completed.
At present there are more than 900 people with cystic fibrosis on the national register. The youngest is less than one year old, the eldest is aged 55.
Ms Foley was speaking at a function in Dublin to launch the Cystic Fibrosis Registry of Ireland as an independent organisation.
She said the aims of the registry were to identify, collect, classify, record, analyse and store information relating to the incidence and treatment of people with cystic fibrosis in Ireland.
It was also intended that it would be used to facilitate research, and in the planning and management of services.
The data collected includes not just personal information on each patient, but also when they were diagnosed and all treatments received.
Ms Foley said improved treatments could be developed using patient registries. "Soon we will have a full description of the cystic fibrosis demographic pattern in Ireland. The next step is to produce survival data in order to compare Ireland with other countries."