المؤلفون: Anna Ambrosini, Ros Quinlivan, Valeria A. Sansone, Ingeborg Meijer, Guus Schrijvers, Aad Tibben, George Padberg, Maarten de Wit, Ellen Sterrenburg, Alexandre Mejat, Alexandra Breukel, Michal Rataj, Hanns Lochmüller, Raffaella Willmann, on behalf of the 235th ENMC workshop study group

المصدر: Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-12 (2019)

مصطلحات موضوعية: Healthcare, Patient engagement, Patient involvement, Neuromuscular diseases, Co-creation, Medicine

وصف الملف: electronic resource

Relation: http://link.springer.com/article/10.1186/s13023-019-1103-8; https://doaj.org/toc/1750-1172

URL الوصول: https://doaj.org/article/9a328ce2a35d47f09c3c4bc026f358dc

المؤلفون: Alexandra Breukel, Raffaella Willmann, Kate Adcock, Alexandre Méjat, Ingeborg Meijer, Ana Ferreiro

المصدر: Neuromuscular Disorders. 33:285-287

مصطلحات موضوعية: Neurology, Pediatrics, Perinatology and Child Health, Neurology (clinical), Genetics (clinical)

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_________::da19e5988e0e34be2756c088f81c1d71
https://doi.org/10.1016/j.nmd.2023.01.005

المؤلفون: Montse Olivé, Lilli Winter, Dieter O. Fürst, Rolf Schröder, Anthony Behin, Alexandra Breukel, Matthias Brumhard, Robert Bryson-Richardson, Kristl Claeys, Ana Ferreiro, Dieter Fürst, Hans H. Goebel, Vandana Gupta, Rudolf Kley, Ami Mankodi, Satoru Noguchi, Anders Oldfors, Duygu Selcen, Vincent Timmerman, Bjarne Udd, Maggie Walter, Conrad Weihl, Gerhard Wiche, Lilly Winter

المصدر: Neuromuscular Disorders. 31:158-166

مصطلحات موضوعية: Neurology, Pediatrics, Perinatology and Child Health, MEDLINE, Neurology (clinical), Computational biology, Biology, Genetics (clinical)

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_________::79780ff42887d375bc689ee28200bd1e
https://doi.org/10.1016/j.nmd.2020.11.003

المؤلفون: Mike Snape, Aad Tibben, Baziel G.M. van Engelen, Mencia de Lemus, Hanns Lochmüller, Alexandra Breukel, Holly L. Peay, Nathalie Bere, Ellen Sterrenburg, George W. Padberg, Raffaella Willmann, Erik Landfeldt, Ingeborg Meijer, Lucia Monaco, Anna Ambrosini, Guus Schrijvers, Elena S. Mazzone, Mats G. Hansson, Anne Lennox

المصدر: Journal of Neuromuscular Diseases, 6, 1, pp. 161-172
Journal of Neuromuscular Diseases, 6(1), 161-172
Journal of Neuromuscular Diseases, 6, 161-172

مصطلحات موضوعية: 0301 basic medicine, medicine.medical_specialty, business.industry, Psychological intervention, Context (language use), Disorders of movement Donders Center for Medical Neuroscience [Radboudumc 3], Biobank, Clinical trial, 03 medical and health sciences, 030104 developmental biology, 0302 clinical medicine, Quality of life (healthcare), Neurology, Family medicine, Health care, medicine, Observational study, Neurology (clinical), Patient participation, Psychology, business, 030217 neurology & neurosurgery

وصف الملف: application/pdf

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::6467b8efa9743a0bfa6e3cac35bda783
https://doi.org/10.3233/jnd-180368

المؤلفون: Filip Eftimov, Carina Bunschoten, Yusuf Rajabally, Luis Querol, Max E. Adrichem, Jeffrey Allen, Jean-Cristophe Antoine, Ivana Basta, Peter Van den Bergh, Patricia Blomkwist-Markens, Alexandra Breukel, David Cornblath, Kathrin Doppler, Stephan Goedee, Robert Hadden, Thomas Harbo, Fu Liong Hiew, Bart C. Jacobs, Helmar Lehmann, Michael P. Lunn, Ingemar S.J. Merkies, Eduardo Nobile-Orazio, Stephen Reddel, Jean-Michel Vallat, Antonino Uncini

المصدر: Neuromuscular Disorders. 28:178-184

مصطلحات موضوعية: 0301 basic medicine, medicine.medical_specialty, business.industry, International standard, MEDLINE, Biobank, 03 medical and health sciences, 030104 developmental biology, 0302 clinical medicine, Neurology, Pediatrics, Perinatology and Child Health, medicine, Diagnostic data, Medical physics, Neurology (clinical), business, 030217 neurology & neurosurgery, Genetics (clinical)

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_________::7db5408b7c5415bca8ab708876a9936f
https://doi.org/10.1016/j.nmd.2017.10.009

المؤلفون: Ingeborg Meijer, Hanns Lochmüller, Ros Quinlivan, George W. Padberg, Aad Tibben, Alexandre Méjat, Anna Ambrosini, Alexandra Breukel, Guus Schrijvers, Valeria A. Sansone, Raffaella Willmann, Michal Rataj, Maarten de Wit, Ellen Sterrenburg

المساهمون: Goemans, Nathalie, Ethics, Law & Medical humanities, Schara, Ulrike (Beitragende*r)

المصدر: Ambrosini, A, Quinlivan, R, Sansone, V A, Meijer, I, Schrijvers, G, Tibben, A, Padberg, G, De Wit, M, Sterrenburg, E, Mejat, A, Breukel, A, Rataj, M, Lochmüller, H, Willmann, R & 235th ENMC workshop study group 2019, ' "be an ambassador for change that you would like to see" : A call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease ', Orphanet Journal of Rare Diseases, vol. 14, no. 1, 126 . https://doi.org/10.1186/s13023-019-1103-8
Orphanet Journal of Rare Diseases, 14, e126
Orphanet Journal of Rare Diseases
Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-12 (2019)
Orphanet Journal of Rare Diseases, 14(1):126. BioMed Central

مصطلحات موضوعية: 0301 basic medicine, PATIENT PARTICIPATION, INVOLVEMENT, Biomedical Research, Decision Making, Medizin, Patient engagement, lcsh:Medicine, 030105 genetics & heredity, Research & Experimental Medicine, Marketing authorization, DIAGNOSIS, DUCHENNE MUSCULAR-DYSTROPHY, 03 medical and health sciences, 0302 clinical medicine, Cultural diversity, Health care, Co-creation, MANAGEMENT, Humans, Pharmacology (medical), Patient involvement, Genetics (clinical), Genetics & Heredity, Medical education, Science & Technology, business.industry, RESEARCH-AND-DEVELOPMENT, Research, lcsh:R, Healthcare, General Medicine, Biobank, Call to action, MODEL, Neuromuscular diseases, Medicine, Research & Experimental, General partnership, Quality of Life, Patient-reported outcome, Psychology, business, SHARED DECISION-MAKING, RARE DISEASES, FOLLOW-UP, Life Sciences & Biomedicine, 030217 neurology & neurosurgery

وصف الملف: Electronic

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::afe7ea9d22ab755d69e4bee38034b7bc
https://research.vumc.nl/en/publications/082020f2-e0cc-44c3-90d2-fbc2c696ac19

المؤلفون: Alexandra Breukel, George W. Padberg, Ellen Sterrenburg, Ingeborg Meijer, Raffaella Willmann

المصدر: Neuromuscular Disorders, 29(4), 330-340

مصطلحات موضوعية: 0301 basic medicine, Medical education, Bibliometric analysis, business.industry, education, 03 medical and health sciences, 030104 developmental biology, 0302 clinical medicine, Neurology, Pediatrics, Perinatology and Child Health, Medicine, Neurology (clinical), Citation, business, 030217 neurology & neurosurgery, Genetics (clinical), Citation score

وصف الملف: application/pdf

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8eef449ef3787fb0dbf9033c11630917
https://pubmed.ncbi.nlm.nih.gov/30853171

المؤلفون: Pascal Laforêt, Anders Oldfors, Edoardo Malfatti, John Vissing, Marie-Anne Colle, Jordi Duran, Matthew Gentry, Joan Guinovart, Thomas Hurley, Or Kakhlon, Thomas Krag, Hal Landy, Camilla B. Lilleør, Berge Minassian, Federico Mingozzi, Elaine Murphy, Richard Piercy, Monique Piraud, Vyas Ramanan, Mads Stemmerik, Christer Thomsen, Miguel Weil

المساهمون: Université de Versailles Saint-Quentin-en-Yvelines - UFR Sciences de la santé Simone Veil (UVSQ Santé), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ), European Neuromuscular Centre, ENMC, This workshop was made possible by the financial support of the European Neuromuscular center (ENMC) and ENMC main sponsors, The organizers are grateful for the valuable support by the ENMC staff especially Managing Director Alexandra Breukel and Operational Manager Annelies Zittersteijn

المصدر: unknow
unknow, 2021, unknow, France. pp.466-477, ⟨10.1016/j.nmd.2021.01.010⟩
Laforêt, P, Oldfors, A, Malfatti, E, Vissing, J, Colle, M A, Duran, J, Gentry, M, Guinovart, J, Hurley, T, Kakhlon, O, Krag, T, Landy, H, Lilleør, C B, Minassian, B, Mingozzi, F, Murphy, E, Piercy, R, Piraud, M, Ramanan, V, Stemmerik, M, Thomsen, C, Weil, M & ENMC 251st workshop study group 2021, ' 251st ENMC international workshop : Polyglucosan storage myopathies 13–15 December 2019, Hoofddorp, the Netherlands ', Neuromuscular Disorders, vol. 31, no. 5, pp. 466-477 . https://doi.org/10.1016/j.nmd.2021.01.010
Neuromuscul Disord

مصطلحات موضوعية: 0303 health sciences, Pediatrics, medicine.medical_specialty, business.industry, MEDLINE, [SDV.BBM.BM]Life Sciences [q-bio]/Biochemistry, Molecular Biology/Molecular biology, Article, 03 medical and health sciences, 0302 clinical medicine, Neurology, Pediatrics, Perinatology and Child Health, Medicine, Neurology (clinical), business, 030217 neurology & neurosurgery, Genetics (clinical), ComputingMilieux_MISCELLANEOUS, 030304 developmental biology

وصف الملف: application/pdf

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::a112e235ca00e1f6b816663aea614a7b
https://hal.archives-ouvertes.fr/hal-03256437