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Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities
Wosinski B, Newman CJ
Developmental neurorehabilitation, 2018
Advances in therapy for spinal muscular atrophy: promises and challenges.
Groen EJN, Talbot K, Gillingwater TH
Nature reviews. Neurology, 2018, Epub, 11 p.
Principles for interactions with biopharmaceutical companies: the development of guidelines for patient advocacy organizations in the field of rare diseases.
Stein S, Bogard E, Boice N, et al.
Orphanet journal of rare diseases, 2018, 13, 1, 10 p.
La bioéthique dans tous ses états. Entretiens parallèles
Rosenczveig JP, Hielle O, Denormandie P, et al.
Actualités sociales hebdomadaires, 2018, 3043, 6-8
Ethical Challenges Confronted When Providing Nusinersen Treatment for Spinal Muscular Atrophy.
Burgart AM, Magnus D, Tabor HK, et al.
JAMA pediatrics, 2017, Epub, 5 p.
Nusinersen for Spinal Muscular Atrophy: Are We Paying Too Much for Too Little?
Prasad V
JAMA pediatrics, 2017
Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics.
Finkel RS, Mercuri E, Meyer OH, et al.
Neuromuscular disorders : NMD, 2017, Epub, 11 p.
Making Sense of Antisense Oligonucleotides: A Narrative Review.
Goyal N, Narayanaswami P
Muscle & Nerve, 2017, Epub, 62 p.
Is There a 'Right to Try' Experimental Therapies? Ethical Criteria for Selecting Patients With Spinal Muscular Atrophy to Receive Nusinersen in an Expanded Access Program.
Jecker NS
The American journal of bioethics : AJOB, 2017, 17, 10, p. 70-71
Droit des usagers : Le régime juridique des directives anticipées
Sa S
Travail social actualités, 2017, 86, p. 40-41
A Historical and Current Review of Newborn Screening for Neuromuscular Disorders From Around the World: Lessons for the United States.
Ross LF, Clarke AJ
Pediatric neurology, 2017, Epub, 11 p.
Gene therapy for Duchenne muscular dystrophy: balancing good science, marginal efficacy, high emotions and excessive cost.
Dalakas MC
Therapeutic advances in neurological disorders, 2017, 10, 8, p. 293-296
Prévenir la transmission des mutations de l'ADN mitochondrial par don de cytoplasme : où en est-on ?
Steffann J, Bonnefont JP, Frydman N
médecine/sciences, 2017, 33,6-7, p. 642-645
Recherche biomédicale et soin, quels enjeux en matière d'éthique pour l'avenir ? : Infos médicales
Even G
VLM. Vaincre les myopathies, 2017, 181, p. 30
New treatments for serious conditions: ethical implications.
King NMP, Bishop CE
Gene therapy, 2017, Epub, 5 p.
Newborn screening for spinal muscular atrophy: The views of affected families and adults.
Boardman FK, Young PJ, Griffiths FE
American journal of medical genetics. Part A, 2017, Epub, 16 p.
Vers un consentement éclairé dynamique
Stoeklé HC, Deleuze JF, Vogt G, et al.
médecine/sciences, 2017, 33, 2, p. 188-192
Parents/Médecins : Et si on avançait ensemble ? (Dossier)
Malo I, Barrier P, Simonnot C, et al.
Déclic : le magazine de la famille et du handicap, 2017, 175, p. 27-34
Genome Editing and Muscle Stem Cells as a Therapeutic Tool for Muscular Dystrophies.
Pini V, Morgan JE, Muntoni F, et al.
Current stem cell reports, 2017, 3, 2, p. 137-148
Natural History, Trial Readiness and Gene Discovery: Advances in Patient Registries for Neuromuscular Disease.
Thompson R, Robertson A, Lochmuller H
Advances in experimental medicine and biology, 2017, 1031, p. 97-124
Réflexions éthiques et respect des droits de la personne malade au domicile
Hirsch E, Deschamps A
Espace Ethique Région Ile de France, 2016, 5, 100 p.
L'accompagnement sexuel en débat (Dossier)
Luthereau A, Marteyn F, Desportes G, et al.
Etre - Handicap information, 2016, 144, p. 41-51
