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

Orphanet Journal of Rare Diseases

Volumn 11, Issue 1, 2016, Pages

  Hollak, Carla E M ^a   Biegstraaten, Marieke ^a   Baumgartner, Matthias R ^b   Belmatoug, Nadia ^c   Bembi, Bruno ^d   Bosch, Annet ^a   Brouwers, Martijn ^e   Dekker, Hanka ^f   Dobbelaere, Dries ^g   Engelen, Marc ^a   Groenendijk, Marike C ^p   Lachmann, Robin ^h   Langendonk, Janneke G ⁱ   Langeveld, Mirjam ⁱ   Linthorst, Gabor ^a   Morava, Eva ^j   Poll The, Bwee Tien ^a   Rahman, Shamima ⁿ   Rubio Gozalbo, M Estela ^k   Spiekerkoetter, Ute ^l   Treacy, Eileen ^m   Wanders, Ronald ^a   Zschocke, Johannes ⁿ   Hagendijk, Rob ^o   more..

^a ACADEMIC MEDICAL CENTER   (Netherlands)

^b UNIVERSITY CHILDREN S HOSPITAL   (Switzerland)

^c ASSISTANCE PUBLIQUE HÔPITAUX DE PARIS   (France)

^d SANTA MARIA DELLA MISERICORDIA UNIVERSITY HOSPITAL   (Italy)

^e MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^f VKS: Dutch Patient Organization for Metabolic Diseases   (Netherlands)

^g LILLE UNIVERSITY HOSPITAL   (France)

^h NATIONAL HOSPITAL FOR NEUROLOGY AND NEUROSURGERY   (United Kingdom)

ⁱ ERASMUS MEDICAL CENTER   (Netherlands)

^j UNIVERSITY OF LEUVEN   (Belgium)

^k MAASTRICHT UNIVERSITY   (Netherlands)

^l UNIVERSITY OF FREIBURG   (Germany)

^m Children's University Hospital   (Ireland)

ⁿ INNSBRUCK MEDICAL UNIVERSITY   (Austria)

^o UNIVERSITY OF AMSTERDAM   (Netherlands)

^p Founder and Department of Metabolic Power Foundation   (Netherlands)

more..

Author keywords

Conflict of interest; European Reference Network; Industry; Orphan diseases; Rare diseases

Indexed keywords

ARTICLE; CONFLICT OF INTEREST; CONSENSUS DEVELOPMENT; EUROPEAN REFERENCE NETWORK; EUROPEAN UNION; HEALTH CARE COST; HEALTH CARE FINANCING; HEALTH CARE INDUSTRY; HEALTH CARE ORGANIZATION; HEALTH CARE POLICY; HEALTH CARE QUALITY; HEALTH PERSONNEL ATTITUDE; HUMAN; PATIENT ATTITUDE; PATIENT CARE; PRACTICE GUIDELINE; PUBLIC HEALTH; RARE DISEASE; SOCIAL ATTITUDE; TRUST; COMMUNITY CARE; EUROPE; HEALTH CARE PERSONNEL; PATIENT ADVOCACY; STANDARDS;

COMMUNITY NETWORKS; EUROPE; HEALTH PERSONNEL; HUMANS; PATIENT ADVOCACY; RARE DISEASES;

EID: 84955273202     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-016-0383-5     Document Type: Article

References (12)

1. 2nd Conference on European Reference Networks http://ec.europa.eu/health/ern/events/ev-20151008-en.htm.
2. Stamatakis E, Weiler R, Ioannidis JP. Undue industry influences that distort healthcare research, strategy, expenditure and practice: a review. Eur J Clin Invest. 2013;43(5):469-75.
3. Relman AS. Separating continuing medical education from pharmaceutical marketing. JAMA. 2001;285(15):2009-12.
4. Directive (EC 2011/24/EU) of the European Parliament and of the Council on the application of patients' rights in cross-border health care. http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32011L0024&qid=1452253324087&from=EN.
5. EUCERD Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States (24 October 2011). http://www.eucerd.eu/upload/file/EUCERDRecommendationCE.pdf.
6. EUCERD Recommendations to the European Commission and the Member States on European Reference Networks for Rare Diseases. http://www.eucerd.eu/?post-type=document&p=2207.
7. Commission Expert Group on Rare Diseases. Rare disease European Reference Networks: addendum to EUCERD recommendations of January 2013. http://ec.europa.eu/health/rare-diseases/docs/20150610-erns-eucerdaddendum-en.pdf.
8. Commission Delegated Decision (2014/286/EU) setting out criteria and conditions that European Reference Networks and healthcare providers wishing to join a European Reference Network must fulfil.
9. Commission Implementing Decision (2014/287/EU) setting out criteria for establishing and evaluating European Reference Networks and their Members and for facilitating the exchange of information and expertise on establishing and evaluating such Networks.
10. Plan National Maladies rare http://www.orpha.net/actor/Orphanews/2011/doc/Plan-national-maladies-rares.pdf.
11. Congiu ME. The Italian national plan for rare diseases. Blood Transfus. 2014;12 Suppl 3:s614-6.
12. Lo B, Field MJ, editors. Institute of Medicine (US) Committee on Conflict of Interest in Medical Research, Education, and Practice. Washington DC: National Academies Press (US); 2009. http://iom.nationalacademies.org/Reports/2009/Conflict-of-Interest-in-Medical-Research-Education-and-Practice.aspx.