In a major advance patients and their families across Europe can now check out on-line the credentials of laboratories offering genetic tests. Over the last two years, EuroGentest, an EU-funded project, has collated in-dept data on the majority of the 1500 + laboratories involved in Member and associated EU States. This data is now freely searcheable as part of the new version of Orpha.net, the leading public portal for rare disease information launched today.
EuroGentest coordinator Professor Jean-Jacques Cassiman commented; “1 in 17 of us will suffer from a genetic disease. As genetic testing increases across the EU, it is essential that patients and their families have upmost confidence in the laboratories performing tests. Since many of the diseases are extremely rare, specialist testing laboratories are often not local and may even be in different countries. Therefore an on-line search tool will, we believe, be a major advance. We are delighted to collaborate with Orpha.net which has rapidly established itself as a trusted and comprehensive source of information throughout Europe.”
Alastair Kent, Director of leading patient interest group GIG, welcomed the launch: “Giving patients and families the opportunity to check out the credentials of labs providing genetic tests is hugely important. Knowing that a lab is listed on a trusted site such as Orpha.net gives confidence in the validity of the results of genetic tests, and means that families are able to make better, more informed decisions”
The search tool lists tests performed laboratory accreditation status, membership of EQA schemes, staff qualifications and research interests. It will be updated on an on-going basis.
Richard Hayhurst | alfa
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