Although June seems a long way away, registration is now open for our workshops on "Accreditation in genetic testing services" and "Towards accreditation – managing the human side of change" to be held just before ESHG in Barcelona. More

Wherever possible EuroGentest seeks to encourage collaboration and we are therefore delighted to announce that the board of the German Society of Human Genetics (GfH) approved the merger of the EMQN External Quality Assessment Scheme with their own scheme More.

Following a successful start, we are now issuing an open call for participation to all cytogenetic labs. According to Ros Hastings, the EQA repertoire is being expanded to include two full EQAs and two new Pilot EQAs for Oncology and Pre-implantation Genetic Diagnosis. Furthermore, as a result of a major EuroGentest member effort, the whole EQA process from registration to final laboratory report is also now online.
Ros also relates one anecdotal example of how the project is catching on: “Milan Macek recently gave an East European Lab our contact details regarding CEQA. The lab really wanted some training in the first instance before participating in CEQA. We were able to suggest some courses and also that they apply for EUGT fellowship money. They did - they are on the course with fellowship funds from EuroGentest!” Read more.

Molecular Genetic testing is evolving rapidly, with the introduction of new technologies such as MLPA, array CGH, ultra high throughput DNA sequencing and the possibility of genotyping over 1 million SNPs in a single experiment. EuroGentest has initiated this workshop to be held in Geel on April 24, to explore the challenges in developing reference materials for such technologies and the opportunities available for collaborative approaches to meeting these challenges. More

Hungary, Slovakia and Lithuania are the latest countries to be surveyed by EuroGentest experts regarding patient rights especially consent, privacy and discrimination Download the reports from www.eurogentest.org.

Invitations to participate in this major survey have been sent to professionals dealing with patenting and licensing in medical biotechnology. EuroGentest strongly encourages its Members to take part in this survey, so as to ensure that its results will accurately reflect the current situation and the needs of the genetic community. More.

The highly successful EuroGentest patient information leaflets are now available in 8 languages: Bulgarian, English, Estonian, Icelandic, Polish, Romanian and Turkish with Arabic, Czech, Finnish, German, Greek, Hungarian, Italian, Portuguese, and Spanish to follow shortly. We hope to have these languages completed and available on the EuroGentest website by the beginning of June. A big thank you to everyone who has helped us with this work. Download from www.eurogentest.org/patients

A series of new EuroGentest patient information leaflets is also underway and we aiming for the first to be ready by the end of the year. These will focus specifically on genetic tests and their emotional and social impact on patients and families. Leaflets currently in progress include: Carrier Testing, Predictive Testing, and Information For Parents When Genetic Testing Is Inconclusive. The content of these leaflets will again be developed with the help of patients and families to ensure that the information we provide is comprehensive, accessible and relevant.

While there are a growing number of non-medical genetic practitioners in clinical practice in Europe, there has not been any organisation dedicated to the needs of those professionals. In addition, nurses and counsellors may be working in situations with few colleagues, where peer support is hard to access. To address these needs, late in 2007, EuroGentest initiated a new European Network of Genetic Nurses and Counsellors with the support of the ESHG. So far, Heather Skirton reports: “we have 72 members in the network, from Netherlands, France, Spain, Portugal, Denmark, Sweden, Finland, Italy, Croatia, Bulgaria, UK, Czech Republic, Greece, Belgium, Cyprus, Ireland, Turkey, Israel, Switzerland, Poland and Iceland. “At present we are collecting basic data on members to determine their needs and plan to have a meeting in Barcelona in May, in conjunction with the ESHG/ EMPAG conference. Please disseminate information about the network to any interested colleagues.” More.

Orphanet is launching, a new version of its website to better serve its 20,000 daily users on February 29, 2008. This “rare” date was selected as an appropriate day to recognise the rare disease community in Europe. For researchers, the new version features an enhanced database of rare diseases with new information on the epidemiology of the diseases (prevalence in the European population, age at onset), on their mode of inheritance, and on related genes when applicable. In addition EuroGentest has provided data on the quality management of laboratories running tests to promote an increased standard of quality across Europe.

Stuart Hogarth and David Melzer have prepared EuroGentest’s proposals for an enhanced framework for the evaluation of new genetic tests before they are granted “CE marking”, the seal of approval which allows IVDs to be placed on the market in the EU. More.

The important documents IVD Directive and Genetic Testing Problems and Core competencies in genetics for health professionals are on the website for comments

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