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1دورية أكاديمية
المؤلفون: Sophie Boursange, Marco Araneda, Caroline Stalens, Isabelle Desguerre, Christine Barnerias, Marie-Christine Nougues, Arnaud Isapof, Susana Quijano-Roy, Nadia Blu Genestine, Laetitia Ouillade, Maripaz Martinez Jalilie, Claudia Castiglioni, Odile Boespflug-Tanguy, Marcela Gargiulo, The SMAPAR Study Group
المصدر: Frontiers in Pediatrics, Vol 10 (2022)
مصطلحات موضوعية: dilemmatic decisions, palliative care, parents, caregivers, spinal amyotrophy type 1, SMAPAR Study, Pediatrics, RJ1-570
وصف الملف: electronic resource
العلاقة: https://www.frontiersin.org/articles/10.3389/fped.2022.1062390/fullTest; https://doaj.org/toc/2296-2360Test
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2دورية أكاديمية
المؤلفون: Minh Thu Nguyen, Jack Goldblatt, Rosario Isasi, Marlene Jagut, Anneliene Hechtelt Jonker, Petra Kaufmann, Laetitia Ouillade, Fruszina Molnar-Gabor, Mahsa Shabani, Eric Sid, Anne Marie Tassé, Durhane Wong-Rieger, Bartha Maria Knoppers, on behalf of the IRDiRC-GA4GH Model Consent Clauses Task Force
المصدر: BMC Medical Ethics, Vol 20, Iss 1, Pp 1-7 (2019)
مصطلحات موضوعية: Rare diseases, Informed consent, Research ethics, Core consent elements, Consent clauses, Medical philosophy. Medical ethics, R723-726
وصف الملف: electronic resource
العلاقة: http://link.springer.com/article/10.1186/s12910-019-0390-xTest; https://doaj.org/toc/1472-6939Test
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3
المؤلفون: Maggie C. Walter, Pascal Laforêt, W. Ludo van der Pol, Elena Pegoraro, Shahram Attarian, Bart Bartels, Ksenija Gorni, Nathalie Goemans, Nicole Gusset, Victoria Hodgkinson, Tim Hagenacker, Janbernd Kirschner, Andrea Klein, Anna Kostera-Pruszczyk, Hanns Lochmüller, Chiara Marini-Bettolo, Eugenio Mercuri, Robert Muni-Lofra, Laetitia Ouillade, Rosaline Quinlivan, Constantinos Papadopoulos, Hélène Prigent, Emmanuelle Salort-Campana, Valeria A Sansone, Rivka Smit, Piera Smeriglio, Simone Thiele, Ben Tichler, Peter Van den Bergh, Juan F Vazquez-Costa, John Vissing
المصدر: Neuromuscular Disorders. 33:511-522
مصطلحات موضوعية: Neurology, Pediatrics, Perinatology and Child Health, Medizin, Neurology (clinical), Genetics (clinical)
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::358ba1ce701ca027f0bfab2def0d78b1Test
https://doi.org/10.1016/j.nmd.2023.03.011Test -
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المؤلفون: Sophie Boursange (14288099), Marco Araneda (14288102), Caroline Stalens (12188333), Isabelle Desguerre (374614), Christine Barnerias (9518276), Marie-Christine Nougues (14288105), Arnaud Isapof (14288108), Susana Quijano-Roy (688506), Nadia Blu Genestine (14288111), Laetitia Ouillade (7117196), Maripaz Martinez Jalilie (14288114), Claudia Castiglioni (14288117), Odile Boespflug-Tanguy (138523), Marcela Gargiulo (3554624), The SMAPAR Study Group (14288120)
مصطلحات موضوعية: Foetal Development and Medicine, Obstetrics and Gynaecology, Paediatrics, Paediatrics and Reproductive Medicine not elsewhere classified, dilemmatic decisions, palliative care, parents, caregivers, spinal amyotrophy type 1, SMAPAR Study, burden, innovative therapies
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5
المؤلفون: Tamara Dangouloff, Arthur Burghes, Eduardo F. Tizzano, Laurent Servais, Enrico Bertini, François Boemer, Mickaël Hiligsmann, Wolfgang Mueller-Felber, Danilo Tiziano, Philip Young, Olga Germanenko, Mencia de Lemus, Laetitia Ouillade, Kasper Rucinski, Kristin Stephenson, Wildon Farwell, Ksenija Gorni, F. Hoffmann, Mikael Hjort, Imran Kausar
المساهمون: Group, NBS SMA Study
المصدر: Neuromuscular disorders : NMD. 30(1)
مصطلحات موضوعية: Newborn screening, Neurofilament, business.industry, Infant, Newborn, Spinal muscular atrophy, Congresses as Topic, Bioinformatics, medicine.disease, Phenotype, Muscular Atrophy, Spinal, Real-time polymerase chain reaction, Neonatal Screening, Neurology, Pediatrics, Perinatology and Child Health, Genotype, medicine, Humans, Neurology (clinical), Genetic variability, Copy-number variation, business, Genetics (clinical), Netherlands
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::6683ede663fbad544252d73c56f8242bTest
https://pubmed.ncbi.nlm.nih.gov/31882184Test