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254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 - 30 January 2022.
Neuromuscul Disord. 2023 Jun;33(6):511-522. doi: 10.1016/j.nmd.2023.03.011. Epub 2023 Mar 29.
Neuromuscul Disord. 2023.
PMID: 37245491
No abstract available.
Model consent clauses for rare disease research.
Nguyen MT, Goldblatt J, Isasi R, Jagut M, Jonker AH, Kaufmann P, Ouillade L, Molnar-Gabor F, Shabani M, Sid E, Tassé AM, Wong-Rieger D, Knoppers BM; IRDiRC-GA4GH Model Consent Clauses Task Force.
Nguyen MT, et al. Among authors: ouillade l.
BMC Med Ethics. 2019 Aug 1;20(1):55. doi: 10.1186/s12910-019-0390-x.
BMC Med Ethics. 2019.
PMID: 31370847
Free PMC article.
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Parents' dilemma: A therapeutic decision for children with spinal muscular atrophy (SMA) type 1.
Boursange S, Araneda M, Stalens C, Desguerre I, Barnerias C, Nougues MC, Isapof A, Quijano-Roy S, Blu Genestine N, Ouillade L, Martinez Jalilie M, Castiglioni C, Boespflug-Tanguy O, Gargiulo M; SMAPAR Study Group.
Boursange S, et al. Among authors: ouillade l.
Front Pediatr. 2022 Dec 21;10:1062390. doi: 10.3389/fped.2022.1062390. eCollection 2022.
Front Pediatr. 2022.
PMID: 36619514
Free PMC article.
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Improving Care and Empowering Adults Living with SMA: A Call to Action in the New Treatment Era.
Walter MC, Chiriboga C, Duong T, Goemans N, Mayhew A, Ouillade L, Oskoui M, Quinlivan R, Vázquez-Costa JF, Vissing J, Servais L.
Walter MC, et al. Among authors: ouillade l.
J Neuromuscul Dis. 2021;8(4):543-551. doi: 10.3233/JND-200611.
J Neuromuscul Dis. 2021.
PMID: 33646175
Free PMC article.
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244th ENMC international workshop: Newborn screening in spinal muscular atrophy May 10-12, 2019, Hoofdorp, The Netherlands.
Dangouloff T, Burghes A, Tizzano EF, Servais L; NBS SMA Study Group.
Dangouloff T, et al.
Neuromuscul Disord. 2020 Jan;30(1):93-103. doi: 10.1016/j.nmd.2019.11.002. Epub 2019 Nov 9.
Neuromuscul Disord. 2020.
PMID: 31882184
Free article.
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