The context for the thematic grouping of rare diseases to facilitate the establishment of European Reference Networks

Orphanet Journal of Rare Diseases

Volumn 11, Issue 1, 2016, Pages

  Evangelista, Teresinha ^a   Hedley, Victoria ^a   Atalaia, Antonio ^a   Johnson, Matt ^b   Lynn, Stephen ^a   Le Cam, Yann ^b   Bushby, Kate ^a  

^a NEWCASTLE UNIVERSITY   (United Kingdom)

^b Europ Org for Rare Dis (EURORDIS)   (France)

Author keywords

European policies; European reference networks; Grouping of rare diseases; Rare Diseases

Indexed keywords

ARTICLE; DISEASE CLASSIFICATION; EUROPE; HEALTH CARE ACCESS; HEALTH CARE ORGANIZATION; HEALTH CARE SYSTEM; HUMAN; INTERNATIONAL COOPERATION; RARE DISEASE; CLASSIFICATION; FACTUAL DATABASE; HEALTH CARE DELIVERY;

DATABASES, FACTUAL; DELIVERY OF HEALTH CARE; EUROPE; HUMANS; RARE DISEASES;

EID: 84959321889     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-016-0398-y     Document Type: Article

References (13)

1. Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patient's rights in cross-border healthcare. OJ L 88, 4.4.2011, p. 45-65
2. 2014/286/EU: Commission Delegated Decision of 10 March 2014 setting out criteria and conditions that European Reference Networks and healthcare providers wishing to join a European Reference Network must fulfil Text with EEA relevance. OJ L 147, 17.5.2014, p. 71-78
3. 2014/287/EU: Commission Implementing Decision of 10 March 2014 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 Text with EEA relevance. OJ L 147, 17.5.2014, p. 79-87
4. Palm W, Glinos IA, Rechel B, Garel P, Reinhard B, Figueras J. Building European Reference Networks in Health Care: Exploring concepts and national practices in the European Union. European Observatory on Health Systems and Policies; 2013. Http://www.euro.who.int/-data/assets/pdf-file/0004/184738/e96805-final.pdf.
5. Position paper: EUROPEAN REFERENCE NETWORKS FOR RARE DISEASES. EURORDIS; May 2012. Http://www.eurordis.org/sites/default/files/EURORDIS-Position-paper-on-ERN-May-2012.pdf
6. EUCERD Report: Preliminary analysis of the experiences and outcomes of pilot European Reference Networks for rare diseases. May 2011. Http://www.eucerd.eu/?post-type=document&p=1357.
7. RDTF Report: European Reference Networks in the field of Rare Diseases: State of the art and Future Directions-July 2008. Http://www.eucerd.eu/?post-type=document&p=1204.
8. EUCERD Recommendations on Rare Diseases European Reference Networks (RD ERN) (31 January 2013) and Addendum (10 June 2015). Http://www.eucerd.eu/?post-type=document&p=2207.
9. Plastrik P and Taylor M. NET GAINS: A Handbook for Network Builders Seeking Social Change. Version 1.0 (2006). Http://networkimpact.org/downloads/NetGainsHandbookVersion1.pdf
10. Andersen T, Le Cam Y, Weinman A. European Reference Networks for rare diseases: The vision of patients. Blood Transfus. 2014;12 Suppl 3:s626-7.
11. Brooks PJ, Tagle DA, Groft S. Expanding rare disease drug trials based on shared molecular aetiology. Nat Biotechnol. 2014;32:515-8.
12. Harrison's Principles of Internal Medicine, 18th Edition. Editors: Longo D L, Fauci A S, Kasper D L, Hauser S L, Jameson J L, Loscalzo J. Publishers: McGraw-Hill Medical
13. Collective Intelligence in Healthcare. Http://www.oakleigh.co.uk.