Presentations

Rome, 21 October 2013

    • Aims of the International Workshop
      Domenica Taruscio

 

    • European Union action in the field of Rare Diseases
      Antoni Montserrat Moliner

 

    • Toward a European Platform for Rare Diseases Registries
      Simona Martin

 

    • The EPIRARE proposal for a EU platform
      Luciano Vittozzi

 

    • E-Rare
      Daria Julkowska

 

    • EU Research Infrastructures
      Filippo Belardelli

 

    • EATRIS Gaps and synergies to develop new treatments for rare disease patients
      Giovanni Migliaccio

 

    • Global Rare Diseases Patient Registry Data Repository (GRDR)
      Yaffa Rubinstein

 

    • Spanish Rare Diseases Registries Research Network – SpainRDR
      Manuel Posada

 

    • The French National Rare Diseases Registries BNDMR-BaMaRa and RaDiCo
      Paul Landais

 

    • The Italian National Registry of Rare Diseases
      Yllka Kodra

 

    • The future of Rare Disease registries: from disease oriented to patient centered
      Georgios Margetidis

 

Rome, 22 October 2013

    • Eurofever Project: update on enrollment after 3 years
      Silvia Federici

 

    • eurIPFreg: A European Registry and Biobank for Patients with Idiopathic Pulmonary Fibrosis
      Fotios Drakopanagiotakis

 

    • The I-DSD Registry A Forum For International Research & Professional Networking
      Faisal Ahmed

 

    • Trial in Progress: TuberOus SClerosis Registry to IncreAse Disease Awareness (TOSCA)
      Carla Fladrowski

 

    • International Registry of Steroid-Resistant Nephrotic Syndrome
      Manuela Curreri

 

    • Italian Cystic Fibrosis Registry (ICFR) data quality assessment
      Natalia Cirilli

 

    • EUROMAC European Registry of patients with McArdle disease and very rare glycogenolytic disorders (MGD)
      Andrea Martinuzzi

 

    • The Lombardy Regional Registry for Rare Diseases
      Laura Bottanelli

 

    • The disease registries as instruments of knowledge and research in rare skeletal dysplasias
      Marina Mordenti

 

    • ECFS Patient Registry
      Jacqui Van Rens

 

    • Why developing an orphan drugs registry?
      Viviana Giannuzzi

 

    • Feasibility of Registry Common Data Elements: results of the EPIRARE survey
      Vittozzi

 

    • Advanced Neuromuscular Registries
      Karen Rafferty

 

    • AIR Alpha-1 International Registry
      Maurizio Luisetti

 

  • Analysis of the phenotypes in the Rett Syndrome Networked Database
    Alessandra Renieri

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