Position statement
Hollak C, Biegstraaten M, Baumgartner M, Belmatoug N, Bembi B, Bosch A, Brouwers M, Dekker H, Dobbelaere D, Engelen M, Groenendijk M, Lachmann R, Langendonk J, Langeveld M, Linthorst G, Morava E, Poll-The B, Rahman S, Rubio-Gozalbo M, Spiekerkoetter U, Treacy E, Wanders R, Zschocke J, Hagendijk R
Orphanet Journal of Rare Diseases 2016, 11 :7 (25 January 2016)
Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks
- Carla E. M. Hollak,
- Marieke Biegstraaten,
- Matthias R. Baumgartner,
- Nadia Belmatoug,
- Bruno Bembi,
- Annet Bosch,
- Martijn Brouwers,
- Hanka Dekker,
- Dries Dobbelaere,
- Marc Engelen,
- Marike C. Groenendijk,
- Robin Lachmann,
- Janneke G. Langendonk,
- Mirjam Langeveld,
- Gabor Linthorst,
- Eva Morava,
- Bwee Tien Poll-The,
- Shamima Rahman,
- M. Estela Rubio-Gozalbo,
- Ute Spiekerkoetter,
- Eileen Treacy,
- Ronald Wanders,
- Johannes Zschocke and
- Rob Hagendijk
Orphanet Journal of Rare Diseases201611:7
DOI: 10.1186/s13023-016-0383-5
© Hollak et al. 2016
Received: 9 December 2015
Accepted: 4 January 2016
Published: 25 January 2016
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 organizations with the aim of maintaining scientific integrity and independence. Specific attention is needed where it concerns the development of clinical practice guidelines. A proposal for a conflict of interest policy is presented, which may support the development of a framework to facilitate collaboration, safeguard professional integrity and to establish and maintain public acceptability and trust among patients, their organizations and the general public.
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