title: Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks.
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.
authors.affiliation: Department of Internal Medicine, Division of Endocrinology and Metabolism, SPHINX, Amsterdam Lysosome Center, Academic Medical Center, Amsterdam, The Netherlands. c.e.hollak@amc.nl.
authors.forename: Carla E M
authors.initials: CE
authors.lastname: Hollak
authors.affiliation: Department of Internal Medicine, Division of Endocrinology and Metabolism, SPHINX, Amsterdam Lysosome Center, Academic Medical Center, Amsterdam, The Netherlands.
authors.forename: Marieke
authors.initials: M
authors.lastname: Biegstraaten
authors.affiliation: Division of Metabolism & Children's Research Center, University Children's Hospital Zürich, Zürich, Switzerland.
authors.forename: Matthias R
authors.initials: MR
authors.lastname: Baumgartner
authors.affiliation: Department of Internal Medicine, Referral Center for Lysosomal Diseases, Hôpitaux Universitaires Paris Nord Val-de-Seine, Beaujon Assistance Publique-Hôpitaux de Paris, Clichy, France.
authors.forename: Nadia
authors.initials: N
authors.lastname: Belmatoug
authors.affiliation: Centre for Rare Diseases, Academic Medical Centre Hospital "Santa Maria della Misericordia", Udine, Italy.
authors.forename: Bruno
authors.initials: B
authors.lastname: Bembi
authors.affiliation: Department of Pediatric Metabolic Disorders, Academic Medical Center, Amsterdam, Netherlands.
authors.forename: Annet
authors.initials: A
authors.lastname: Bosch
authors.affiliation: Department of Internal Medicine, Division of Endocrinology and Metabolic Diseases, Maastricht University Medical Centre, Maastricht, The Netherlands.
authors.forename: Martijn
authors.initials: M
authors.lastname: Brouwers
authors.affiliation: VKS: Dutch Patient Organization for Metabolic Diseases, Zwolle, The Netherlands.
authors.forename: Hanka
authors.initials: H
authors.lastname: Dekker
authors.affiliation: Medical Reference Center for Inherited Metabolic Diseases, Jeanne de Flandre University Hospital and RADEME Research Team for Rare Metabolic and Developmental Diseases, EA 7364 CHRU Lille, 59037, Lille, France.
authors.forename: Dries
authors.initials: D
authors.lastname: Dobbelaere
authors.affiliation: Department of Neurology and Department of Pediatric Neurology, Academic Medical Center, Amsterdam, The Netherlands.
authors.forename: Marc
authors.initials: M
authors.lastname: Engelen
authors.affiliation: Founder and Chair Metabolic Power Foundation, a fund raising charity for more awareness and research into metabolic diseases, Haarlem, The Netherlands.
authors.forename: Marike C
authors.initials: MC
authors.lastname: Groenendijk
authors.affiliation: Charles Dent Metabolic Unit, National Hospital for Neurology and Neurosurgery, University College London Hospitals, London, UK.
authors.forename: Robin
authors.initials: R
authors.lastname: Lachmann
authors.affiliation: Department of Internal Medicine, Netherlands Porphyria Center, Center for Lysosomal and Metabolic Diseases, Erasmus MC, Rotterdam, The Netherlands.
authors.forename: Janneke G
authors.initials: JG
authors.lastname: Langendonk
authors.affiliation: Department of Internal Medicine, Netherlands Porphyria Center, Center for Lysosomal and Metabolic Diseases, Erasmus MC, Rotterdam, The Netherlands.
authors.forename: Mirjam
authors.initials: M
authors.lastname: Langeveld
authors.affiliation: Department of Internal Medicine, Division of Endocrinology and Metabolism, SPHINX, Amsterdam Lysosome Center, Academic Medical Center, Amsterdam, The Netherlands.
authors.forename: Gabor
authors.initials: G
authors.lastname: Linthorst
authors.affiliation: Children's Hospital Leuven, University of Leuven, Leuven, Belgium.
authors.forename: Eva
authors.initials: E
authors.lastname: Morava
authors.affiliation: Department of Neurology and Department of Pediatric Neurology, Academic Medical Center, Amsterdam, The Netherlands.
authors.forename: Bwee Tien
authors.initials: BT
authors.lastname: Poll-The
authors.affiliation: Division of Human Genetics, Medical University Innsbruck, Innsbruck, Austria.
authors.forename: Shamima
authors.initials: S
authors.lastname: Rahman
authors.affiliation: Departments of Paediatrics and Laboratory Genetic Metabolic Diseases, Maastricht University Hospital, Maastricht, The Netherlands.
authors.forename: M Estela
authors.initials: ME
authors.lastname: Rubio-Gozalbo
authors.affiliation: Department of Pediatrics, Adolescent Medicine and Neonatology, University Children's Hospital, Freiburg, Germany.
authors.forename: Ute
authors.initials: U
authors.lastname: Spiekerkoetter
authors.affiliation: National Centre for Inherited Metabolic Disorders, Children's University and Mater University Hospitals, Dublin, Ireland.
authors.forename: Eileen
authors.initials: E
authors.lastname: Treacy
authors.affiliation: Department of Genetic Metabolic Diseases, SPHINX, Amsterdam Lysosome Center, Academic Medical Center, Amsterdam, The Netherlands.
authors.forename: Ronald
authors.initials: R
authors.lastname: Wanders
authors.affiliation: Division of Human Genetics, Medical University Innsbruck, Innsbruck, Austria.
authors.forename: Johannes
authors.initials: J
authors.lastname: Zschocke
authors.affiliation: Amsterdam Institute for Social Science Research, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Rob
authors.initials: R
authors.lastname: Hagendijk
mesh_terms: D019058:Community Networks; D005060:Europe; D006282:Health Personnel / Q000592:standards*; D006801:Humans; D010344:Patient Advocacy / Q000592:standards*; D035583:Rare Diseases
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