RD-ACTION / EMA / DG SANTE workshop: how European Reference Networks can add value to clinical research

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TitleRD-ACTION / EMA / DG SANTE workshop: how European Reference Networks can add value to clinical research
Date29/05/2018 - 30/05/2018
LocationEuropean Medicines Agency, London, UK
SummaryThe 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.

All documents

Name Language First published Last updated
Agenda - RD-ACTION, European Medicines Agency, and European Commission-DG SANTE workshop: how European Reference Networks can add value to clinical research (English only) 2018-05-22 2018-06-19
List of participants – RD-ACTION, European Medicines Agency, and European Commission-DG SANTE workshop: how European Reference Networks can add value to clinical research (English only) 2018-06-19  
Presentation - Introduction to the workshop: aims and expected outputs (Victoria Hedley) (English only) 2018-06-19  
Presentation - The European reference networks: a vision from inside (Maurizio Scarpa) (English only) 2018-06-19  
Presentation - ERNs and research - State of play from the European Commission perspective (Iiro Eerola) (English only) 2018-06-19  
Presentation - ERNs and research: state of play from the European Commission perspective (Helene Le Borgne) (English only) 2018-06-19  
Presentation - ERNs and research: state of play from the European Commission perspective - 'Snapshot' of ERNs and medicinal product point of view (Anneli Torronen) (English only) 2018-06-19  
Presentation - 'Snapshot' of transversal activities regarding ERNs and clinical research (Eduardo López Granados, Eileen Treacy, Daria Julkowska) (English only) 2018-06-19  
Presentation - Status quo of ERNs and clinical research: results of the ERN-wide survey (Luca Sangiorgi) (English only) 2018-06-19  
Presentation - The research potentials of MetabERN: a survey to investigate and prioritise actions (Jean Michel Heard) (English only) 2018-06-19  
Presentation - EURO-NMD case study (Teresinha Evangelista) (English only) 2018-06-19  
Presentation - ERN case studies: BOND ERN (Luca Sangiorgi) (English only) 2018-06-19  
Presentation - Case study: EURACAN clinical research (Stephane Lejeune) (English only) 2018-06-19  
Presentation - Patient expectations for meaningful engagement in ERN-related clinical research (Russell Wheeler) (English only) 2018-06-19  
Presentation - Working to protect public health in the European Union (Ivana Silva) (English only) 2018-06-19  
Presentation - Early engagement and support for medicine development (Stiina Aarum) (English only) 2018-06-19  
Presentation - Advanced therapy medicinal products (ATMPs) and ATMP Regulation (Patrick Celis) (English only) 2018-06-19  
Presentation - Clinical trials in the European Union: how European Reference Networks can add value to clinical research (Laura Pioppo) (English only) 2018-06-19  
Presentation - The European Medicines Agency Patient Registries Initiative (Xavier Kurz) (English only) 2018-06-19  

Media Videos


Video recording

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To view use the ‘Multimedia’ tab.

Registration

  • Registration by invitation only

Live broadcast

  • 29 May 2018
    09:00 - 17:45 UK time

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Contact point:

Catalin Rolea
catalin.rolea@ema.europa.eu