269th ENMC international workshop: 10 years of clinical trials in Duchenne muscular dystrophy - What have we learned? 9-11 December 2022, Hoofddorp, The Netherlands.

Clinical trial Duchenne muscular dystrophy Meaningfulness Outcome measure Real world data

Journal

Neuromuscular disorders : NMD
ISSN: 1873-2364
Titre abrégé: Neuromuscul Disord
Pays: England
ID NLM: 9111470

Informations de publication

Date de publication:
Nov 2023
Historique:
received: 30 09 2023
accepted: 10 10 2023
medline: 4 12 2023
pubmed: 6 11 2023
entrez: 5 11 2023
Statut: ppublish

Résumé

There are multiple avenues for therapeutic development in Duchenne muscular dystrophy (DMD), which are highlighted in the first section of this report for the "10 years of Clinical trials in DMD - What have we learned?" workshop. This report then provides an overview of the presentations made at the workshop grouped into the following core themes: trial outcomes, disease heterogeneity, meaningfulness of outcomes and the utility of real-world data in trials. Finally, we present the consensus that was achieved at the workshop on the learning points from 10 years of clinical trials in DMD, and possible action points from these. This includes further work in expanding the scope and range of trial outcomes and assessing the efficacy of new trial structures for DMD. We also highlight several points which should be addressed during future interactions with regulators, such as clinical meaningfulness and the use of real-world data.

Identifiants

pubmed: 37926638
pii: S0960-8966(23)00748-4
doi: 10.1016/j.nmd.2023.10.003
pii:
doi:

Types de publication

Clinical Conference

Langues

eng

Sous-ensembles de citation

IM

Pagination

897-910

Informations de copyright

Copyright © 2023.

Déclaration de conflit d'intérêts

Declaration of Competing Interest None.

Auteurs

Karin J Naarding (KJ)

Department of Neurology, Leiden University Medical Center, Leiden, the Netherlands; Duchenne Center Netherlands, the Netherlands.

Georgia Stimpson (G)

UCL Great Ormond Street Institute of Child Health, Dubowitz Neuromuscular Centre, London, UK.

Susan J Ward (SJ)

Collaborative Trajectory Analysis Project (cTAP), United States.

Nathalie Goemans (N)

University Hospitals Leuven, Dept of Child Neurology, Leuven, Belgium.

Craig McDonald (C)

Department of Physical Medicine and Rehabilitation in Sacramento, University of California, Davis, CA, United States.

Eugenio Mercuri (E)

Pediatric Neurology Unit, Catholic University, Rome, Italy; Centro Clinico Nemo, U.O.C. Neuropsichiatria Infantile Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy.

Francesco Muntoni (F)

UCL Great Ormond Street Institute of Child Health, Dubowitz Neuromuscular Centre, London, UK; National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre, London, UK. Electronic address: f.muntoni@ucl.ac.uk.

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Classifications MeSH