27 April 2006

Cystic Fibrosis Database to be extended across Europe

The UK Cystic Fibrosis Database, based at the University of Dundee, is to be extended across Europe in a bid to unite research projects and encourage collaborations across the Continent.

The European Commission has just awarded a grant of 1.75 million Euros to establish EuroCareCF (European Co-Ordination Action for Research in Cystic Fibrosis). Around 400,000 Euros of that award is going to the centre in Dundee to enable their patient registry programmes to expand across Europe.

"The database is extremely important because it allows us to analyse large groups of Cystic Fibrosis sufferers and therefore target our research more effectively," said Dr Anil Mehta, head of the CF database group in the University of Dundee Medical School at Ninewells Hospital.

"Because of the nature of the disease, which has more than 1000 mutations and occurs in around 1 in 2500 people, you need an extremely large population sample to give you sufficient data."

"Expanding this data collection right across around 25 countries in Europe will have a significant effect in future research into the disease. For example, it will help us to target distinct groups of patients for future clinical trials as potential new treatments become available."

The grant award will fund a three-year programme by Dr Mehta and his team to link countries across Europe into the database.

Around 90% of CF sufferers in the UK - approximately 7000 people - are registered in the database. If similar numbers can be recruited to the database across the Continent, then researchers would have a massively increased volume of data to work from.

There are further hopes to widen the database even more. "The long-term aim would be to establish links to create a worldwide database that involves the USA and Australia," said Dr Mehta, who is also carrying out his own laboratory research into the disease.

NOTES TO EDITORS

Cystic Fibrosis (CF) is an inherited disease that induces long term morbidity leading to multiple medical consultations. CF patients, in common with those with suffering from any other chronic disease, are widely dispersed throughout the United Kingdom. 5% of the population are carriers of the affected CF gene and there are over 1000 mutations producing clinical disease. The result is that the current 7500 or so patients in the UK present with a range of symptoms and degrees of severity of their condition, requiring therapies tailored to their specific needs.

The UK CF database started in Dundee in 1992 as a project to audit the health of CF patients in Scotland. In 1999, it was extended across the UK.

The Database played a key role in the submission to the Government about the potential benefits from genetic screening for CF at birth. As a result, neonatal screening for CF was introduced in Scotland in February 2003, and later in the rest of the UK.The Scottish and UK experience led to a request from the North American Government to help with their screening programme.

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