RD-ACTION / EMA / DG SANTE workshop: how European Reference Networks can add value to clinical research
The main objective of this workshop organised by the European Medicines Agency (EMA), RD-ACTION (the European Joint Action for Rare Diseases) and the European Commission's Directorate General for Health and Food Safety (DG SANTE), is to explore how to work together with the European Reference Networks (ERNs) in the field of complex and rare diseases. The workshop will look at how EMA and ERNs can reinforce each other's efforts to encourage and facilitate research into new treatments for rare and low-prevalence complex diseases and how ERNs could be engaged in EMA activities. The first ERNs were launched in March 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 European Union countries. Presently, 24 ERNs are operational covering a large range of therapeutic areas.
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Agenda - RD-ACTION, European Medicines Agency, and European Commission-DG SANTE workshop: how European Reference Networks can add value to clinical research (PDF/189.4 KB)
First published: 22/05/2018
Last updated: 19/06/2018
EMA/270801/2018 -
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List of participants – RD-ACTION, European Medicines Agency, and European Commission-DG SANTE workshop: how European Reference Networks can add value to clinical research (PDF/148.34 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - Introduction to the workshop: aims and expected outputs (Victoria Hedley) (PDF/1.1 MB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - The European reference networks: a vision from inside (Maurizio Scarpa) (PDF/5 MB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - ERNs and research - State of play from the European Commission perspective (Iiro Eerola) (PDF/574.61 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - ERNs and research: state of play from the European Commission perspective (Helene Le Borgne) (PDF/1.89 MB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - ERNs and research: state of play from the European Commission perspective - 'Snapshot' of ERNs and medicinal product point of view (Anneli Torronen) (PDF/324.9 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - 'Snapshot' of transversal activities regarding ERNs and clinical research (Eduardo Là³pez Granados, Eileen Treacy, Daria Julkowska) (PDF/1.97 MB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - Status quo of ERNs and clinical research: results of the ERN-wide survey (Luca Sangiorgi) (PDF/634.35 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - The research potentials of MetabERN: a survey to investigate and prioritise actions (Jean Michel Heard) (PDF/174.76 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - EURO-NMD case study (Teresinha Evangelista) (PDF/873.25 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - ERN case studies: BOND ERN (Luca Sangiorgi) (PDF/747.56 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - Case study: EURACAN clinical research (Stephane Lejeune) (PDF/695.15 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - Patient expectations for meaningful engagement in ERN-related clinical research (Russell Wheeler) (PDF/339.33 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - Working to protect public health in the European Union (Ivana Silva) (PDF/3.74 MB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - Early engagement and support for medicine development (Stiina Aarum) (PDF/1.98 MB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - Advanced therapy medicinal products (ATMPs) and ATMP Regulation (Patrick Celis) (PDF/1.76 MB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - Clinical trials in the European Union: how European Reference Networks can add value to clinical research (Laura Pioppo) (PDF/943.91 KB)
First published: 19/06/2018
Last updated: 19/06/2018 -
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Presentation - The European Medicines Agency Patient Registries Initiative (Xavier Kurz) (PDF/1.12 MB)
First published: 19/06/2018
Last updated: 19/06/2018