Dundee-based cystic fibrosis database to be extended across Europe

More than 25 per cent of a 1.75 million Euro European Commission grant to establish EuroCareCF (European Co-Ordination Action for Research in Cystic Fibrosis) has been awarded to the University of Dundee-based UK Cystic Fibrosis Database.

The funds will enable the centre to expand their patient registry programmes across Europe, and is also intended to unite research projects and encourage collaborations across the Continent.

"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 Medical School at Ninewells Hospital.

"Because of the nature of the disease, which has more than 1000 mutations and occurs in around one 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 UK CF database fist started in Dundee in 1992 as a project to audit the health of CF patients across Scotland on a computer donated to Dr Mehta by a local Dundee family.

In 1999 it was extended across the UK with approximately 90 per cent of UK CF sufferers - about 7000 people - now registered on the database.

The European grant award will fund a three-year programme by Dr Mehta and his team to link countries across Europe into the database, which will potentially provide the researchers will 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, which will be published later this year in a prestigious journal.

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.

Recently, the favourable outcome screening data has been published in a highly-rated paediatric journal and the Dutch government have requested the findings for thier proposed screening programme.