EuroGentest announces European Cytogenetics EQA pilot scheme and BRCA test evaluation at ESHG

Leading EU project starts second year with 4 major new initiatives

Leuven, May 19, 2006: EuroGentest announced a series of initiatives following the European Society of Human Genetics in Amsterdam designed to enhance and harmonise genetic testing across the EU. These include piloting the first European-wide cytogenetics EQA scheme, drawing up minimum guidelines on genetic counselling, defining core competencies for all professionals involved in genetic testing and counselling and the independent evaluation of new testing technologies such as for the BRCA gene.

According to EuroGentest coordinator Professor Jean-Jacques Cassiman, these initiatives are the first of many as the Network of Excellence enters its second year: “The first year involved scoping and analysing the existing situation in Europe for all aspects of genetic testing and now the 6 Units that make up the project are moving rapidly ahead with practical initiatives. The exciting news on new therapies at ESHG for eg Hunters and Duchennes makes our work even more important.”

The four key initiatives announced at ESHG are:

Piloting a European Cytogenetics EQA scheme – EuroGentest Unit 1 found that as accreditation comes to the forefront of the agenda for all genetic testing laboratories, there is also growing desire to participate in EQA schemes. For the newer member states in particular the need for common European EQA schemes is acute, and the cytogenetics initiative is EuroGentest’s initial response. In addition to the pilot scheme the first EuroGentest Accreditation Workshop open to all will be held in Leuven on September 18th-19th. A database is also being set up to enable the public to see the Quality Assurance status of any laboratory they may visit.

Defining core competencies for the various professions – from midwives and nurses to physicians and consultants - involved in genetic testing and counselling. EuroGentest Unit 6 will achieve this through a series of expert meetings between professionals and patient organizations. They will take a bottom-up approach to advising on curricula. This will enable training bodies to draw on a shared European knowledge base of common education and training, but still be able to set their own curricula that respects the legal and cultural differences among the 25 EC member states.

Recommendations on minimum standards for genetic counselling across Europe - EuroGentest Unit 3 have already published a summary of international guidelines and are using this to prepare minimum recommendations for the counselling any patient taking a genetic test should receive, before, during and after the test procedure.

Independent evaluations of new testing technologies - Data was presented at ESHG on the first of these, looking at BRCA testing using MLPA. EuroGentest Unit 5 is providing a facility whereby industry can submit their new technologies for evaluation through a network of genetic testing laboratories across Europe.

-Ends-

Notes to editors

EuroGentest is an EU-funded project (10 million Euro for 5 years) that aims to establish an NoE (Network of Excellence) in genetic testing. Started in January 2005 the project is coordinated by Professor Jean-Jacques Cassiman, an acknowledge world expert in CF testing who holds the Arthur Bax and Anna Vanluffelen chair of Human Genetics at the Center for Human Genetics in Leuven, Belgium. The project is divided into 6 units each with a number of working parties.

More information is available at www.eurogentest.org

Facts and figures

No of testing centres in Europe – 1500

Number of conditions tested >1000

Annual growth in testing - 100-300%

Number of people in the EU suffering from genetic disease > 30 million

Cost to EU health sector – EUROS 500 million