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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
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
ISGSD I/III Network

Austria

Belgium

Canada

Czech Republik

Faroër Islands

France

Germany

Great Britain

Hungary

Italy

Israel

Poland

Sweden

The Netherlands

Turkey

USA



Characteristics gsd i and iii network
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


Gsd i and iii combined database

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


Collaboration1
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


Esgsd i isgsd i spin off
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