Research activity and capability in the European reference network MetabERN
MetabERN is one of the 24 European Reference Networks created according to the European Union directive 2011/24/EU on patient’s rights in cross border healthcare. MetabERN associates 69 centres in 18 countries, which provide care for patients with Hereditary Metabolic Diseases, and have the mission...
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| Main Authors: | , , |
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| Format: | Article (Journal) |
| Language: | English |
| Published: |
29 May 2019
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| In: |
Orphanet journal of rare diseases
Year: 2019, Volume: 14, Pages: 1-9 |
| ISSN: | 1750-1172 |
| DOI: | 10.1186/s13023-019-1091-8 |
| Online Access: | Verlag, Volltext: https://doi.org/10.1186/s13023-019-1091-8
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| Author Notes: | Jean-Michel Heard, Cinzia Bellettato, Corine van Lingen, Maurizio Scarpa, François-Guillaume Debray, Marie-Cécile Nassogne, Rudy van Coster, Linda De Meirleir, François Eyskens, Eva Morava, Ivo Baric, Viktor Kozich, Allan Meldgaard Lund, Dominique Germain, Nadia Belmatoug, Nathalie Guffon, Philippe Labrune, Laurent Gouya, Pascale de Lonlay, Manuel Schiff, Dries Dobbelaere, Brigitte Chabrol, Anihb Martin Das, Maurizio Scarpa, Ute Spiekerkoetter, Frank Rutsch, Ursula Ploeckinger, Klaus Mohnike, Andreas Hahn, Stefan Kölker, Kurt Ullrich, István Balogh, Bruno Bembi, Maria Alice Donati, Serena Gasperini, Giancarlo Parenti, Alessandro Salviati, Carlo-Dionisi Vici, Maja di Rocco, Graziella Cefalo, Alberto Burlina, Giovanni Ceccarini, Antonio Federico, Ans van der Ploeg, Maria-Estela Rubio-Gozalbo, Francian van Spronsen, Gepke Visser, Annet Bosch, Trine Tangeraas, Sverre Sanderberg, Beata Kieć-Wilk, Ana-Maria Simões Mendes Gaspar, Esmeralda Martins, Esmeralda-Maria Ferreira Rodrigues Silva, Luísa-Maria de Abreu Freire Diogo Matos, Olga Azevedo, Mojca-Zerjav Tansek, Maria-Luz Couce-Pico, Angeles Garcia Cazorla, Luis Aldámiz-Echevarría Azuara, Mireia del Toro-Riera, Svetlana Lajic, Niklas Darin, Patrick Deegan, Suresh Vijaym, Efstathia Chronopoulou, Simon Jones, Anupanm Chakrapani, Tarekegn Hiwot, the MetabERN collaboration group |
| Summary: | MetabERN is one of the 24 European Reference Networks created according to the European Union directive 2011/24/EU on patient’s rights in cross border healthcare. MetabERN associates 69 centres in 18 countries, which provide care for patients with Hereditary Metabolic Diseases, and have the mission to reinforce research and provide training for health professionals in this field. MetabERN performed a survey in December 2017 with the aim to produce an overview documenting research activities and potentials within the network. As the centres are multidisciplinary, separated questionnaires were sent to the clinical, university and laboratory teams. Answers were received from 52 out of the 69 centres of the network, covering 16 countries. A descriptive analysis of the information collected is presented. |
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| Item Description: | Gesehen am 02.07.2019 |
| Physical Description: | Online Resource |
| ISSN: | 1750-1172 |
| DOI: | 10.1186/s13023-019-1091-8 |