Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks

Orphanet Journal of Rare Diseases
Carla E M HollakRob Hagendijk

Abstract

A call from the EU for the set-up of European Reference Networks (ERNs) is expected to be launched in the first quarter of 2016. ERNs are intended to improve the care for patients with low prevalent or rare diseases throughout the EU by, among other things, facilitating the pooling and exchange of experience and knowledge and the development of protocols and guidelines. In the past, for example where costly orphan drugs have been concerned, industry has played an important role in facilitating consensus meetings and publication of guidelines. The ERNs should provide a unique opportunity for healthcare professionals and patients to lead these activities in an independent way. However, currently costs for networking activities are not to be covered by EU funds and alternative sources of funding are being explored. There is growing concern that any involvement of the industry in the funding of ERNs and their core activities may create a risk of undue influence. To date, the European Commission has not been explicit in how industry will be engaged in ERNs. We believe that public funding and a conflict of interest policy are needed at the level of the ERNs, Centers of Expertise (CEs), healthcare professionals and patient organizatio...Continue Reading

References

Apr 20, 2001·JAMA : the Journal of the American Medical Association·A S Relman
Mar 26, 2013·European Journal of Clinical Investigation·Emmanuel StamatakisJohn P A Ioannidis

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Citations

Apr 3, 2016·Journal of Inherited Metabolic Disease·Johannes ZschockeShamima Rahman
Aug 9, 2017·Orphanet Journal of Rare Diseases·Véronique Héon-Klin
Oct 16, 2016·Pediatric Nephrology : Journal of the International Pediatric Nephrology Association·Diana Karpman, Peter Höglund
Oct 5, 2017·Expert Review of Pharmacoeconomics & Outcomes Research·Ana V PejcicMihajlo Michael Jakovljevic
Feb 20, 2018·Drug Discovery Today·Yvonne SchullerCarla E M Hollak

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