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Collaboration

Collaboration. Extend Databases GSD I and GSD III Update Guidelines follow-up and therapy Initiate new Collaborative studies Expand Databases with tissue samples. ISGSD I/III Network. Austria Belgium Canada Czech Republik Faroër Islands France Germany Great Britain. Hungary Italy

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Collaboration

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  1. Collaboration • Extend Databases GSD I and GSD III • Update Guidelines follow-up and therapy • Initiate new Collaborative studies • Expand Databases with tissue samples

  2. ISGSD I/III Network Austria Belgium Canada Czech Republik Faroër Islands France Germany Great Britain Hungary Italy Israel Poland Sweden The Netherlands Turkey USA

  3. GSD I & III network around the world…

  4. Characteristics GSD I and III Network • Combining data from multiple centre in one database • Registration and follow up per patient, with easy dashboard and notification per e-mail • Rolebased access, only insight in your “own” patientdata • Administrator has insight in all (anonymous) data • Secure webapplication • Easy to expand with new participants, questionnaires and research studies

  5. Internet GSD I and III combined Database Portal center Florida Portal center Hamburg Portal center Paris Portal center Napels etc.etc. Research database Portal Research administrator

  6. Collaboration • Extend Databases GSD I and GSD III • Update Guidelines follow-up and therapy • Initiate new Collaborative studies • Expand Databases with tissue samples • liver kidney muscle fibroblasts DNA

  7. ESGSD I ISGSD I spin-off: • Uniek netwerk verbonden door GSD-Intranet • Dissertaties G.Visser, J.P.Rake, D.H.J.Martens 2008 • ISGSD III studie C.P.Sentner • Richtlijnen voor behandeling en follow-up • Conferentie Manchester 2008 aanpassing richtlijnen • EU FP7 aanvraag

  8. Example

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