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Brussels Presentation July9th
 

Brussels Presentation July9th

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    Brussels Presentation July9th Brussels Presentation July9th Presentation Transcript

    • A European Network of Centres of Expertise for Dysmorphology DYSCERNE is funded by the European Commission Public Health Executive Agency (DG Sanco) Project: 2006122 - A European Network of Centres of Expertise for Dysmorphology DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • Why do we need a Dysmorphology Network? • >2,500 rare conditions have been identified • These diseases are individually rare, but collectively important • There are relatively few experts in dysmorphology • Correct diagnosis is the cornerstone of patient management DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • DYSCERNE Network Objectives 1.To form a European network of Centres of Expertise for dysmorphology 2.To create a web-based, electronic Dysmorphology Diagnostic System (DDS) 3.To develop management guidelines for selected dysmorphic syndromes DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • DYSCERNE Network 1. The Partners: Jill Clayton-Smith, Bronwyn Kerr, Dian Donnai & Kay Metcalfe Manchester, UK (Lead Partner) Koenraad Devriendt Leuven, BELGIUM Nicole Philip Marseille, FRANCE Bruno Dallapiccola San Giovanni Rotondo, ITALY Han Brunner & Ineke Van der Burgt Nijmegen, NETHERLANDS Malgorzata Krajewska-Walasek & Krystyna Chrzanowska Warsaw, POLAND DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • DYSCERNE Network 2. Expert Panel: Geert Mortier (Ghent) Alain Verloes (Paris) Jeanne Amiel (Paris) Annick Toutain (Tours) Anita Rauch (Erlangen) Gabriele Gillessen-Kaesbach (Lubeck) Peter Meinecke (Hamburg) Willie Reardon (Dublin) Ineke van der Burgt (St Radboud) Krystyna Chrzanowska (Warsaw) Michael Baraitser (London) Louise Brueton (Birmingham) David Fitzpatrick (Edinburgh) Mohnish Suri (Nottingham) Karen Temple (Southampton) John Tolmie (Glasgow) Di Donnai (Manchester) Bronwyn Kerr (Manchester) Kay Metcalfe (Manchester) Armand Bottani (Geneva) DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • DYSCERNE Network 3. Submission Nodes: Amsterdam Iasi Rennes Athens Istanbul Riga Barcelona Leiden Rome Belfast Lille Rotterdam Benevento Lisbon Skopje Bergen Ljubljana Sofia Bordeaux London Stockholm Bratislava Lyon Tartu Brussels Maastricht Tirana Cardiff Madrid Utrecht Coimbra Montpellier Valletta Copenhagen Nicosia Vienna Dijon Oslo Vilnius Essen Padova Warsaw Glasgow Pécs Zaragoza Groningen Poznan Heidelberg Prague Helsinki DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • Benefits of European Networks • Able to utilise widely dispersed clinical expertise and improve standards in diagnosis and disease management • Collating and archiving information from many sources facilitates definition and delineation of new syndromes • Established networks provide the means to effectively disseminate information on best practice • New networks can learn from the experiences of others DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • Challenges for European Networks • Language difficulties – potentially 23 languages in a Europe wide network • Complex administrative systems to cope with - especially financial • Attracting and retaining high quality project workers when funding (and jobs) are for a limited period • Sustainability - need to think from onset about how network funded after EU funding comes to an end. DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • Establishing a European Network • Ensure your Network has good geographical coverage. • Identify and utilise relevant expertise. • Establish and maintain good communication links. • Set up a strong project team with a dedicated coordinator. • Develop a clear strategy for dissemination. • Make your network inclusive rather than exclusive. DYSCERNE – A Network of Centres of Expertise for Dysmorphology
    • Acknowledgements DYSCERNE is funded by the European Commission Public Health Executive Agency (DG Sanco) Project: 2006122 - A European Network of Centres of Expertise for Dysmorphology DYSCERNE is coordinated by the UK Partners based at the University of Manchester. The contact for further information is: Pam Griffiths pam.griffiths@cmmc.nhs.uk 44 (0) 161 276 3209 DYSCERNE – A Network of Centres of Expertise for Dysmorphology