Evidentiary basis of the first regulatory qualification of a digital primary efficacy endpoint


Por: Servais L, Strijbos P, Poleur M, Mirea A, Butoianu N, Sansone VA, Vuillerot C, Schara-Schmidt U, Scoto M, Seferian AM, Previtali SC, Tulinius M, Nascimento-Osorio A, Furlong P, Singh T, Dreghici RD, Goemans N, Mercuri E, Straub V, Ormazabal MG, Braid J, Muntoni F, Tricot A, Annoussamy M and Eggenspieler D

Publicada: 29 nov 2024 Ahead of Print: 29 nov 2024
Resumen:
Stride velocity 95th centile (SV95C) is a wearable-derived endpoint representing the 5% fastest strides taken during everyday living. In July 2023, SV95C received European Medicines Agency (EMA) qualification for use as a primary endpoint in trials of patients with Duchenne muscular dystrophy (DMD) aged >= 4 years-becoming the first digital endpoint to receive such qualification. We present the data supporting this qualification, providing insights into the evidentiary basis of qualification as a digital clinical outcome assessment. Clinical trials, natural history studies, and patient surveys (ages 5 - 14 years) showed that SV95C is accurate, valid, reliable, sensitive, and clinically meaningful. SV95C significantly correlated with traditional DMD assessments, increased rapidly after steroid initiation (0.090 m/s 3 months post-treatment), and declined steadily in patients on stable steroid regimens. Compared with traditional assessments, SV95C demonstrated earlier sensitivity to disease progression (3 vs 9 months) and greater sensitivity at 12 months. Distribution- and anchor-based approaches revealed a change of - 0.10 to - 0.20 m/s as clinically meaningful. The EMA qualification of SV95C illustrates the willingness of regulators to accept novel digital endpoints for drug approval, setting an important precedent for the evidentiary basis of regulatory digital endpoint qualification that could transform clinical development in disorders affecting movement.

Filiaciones:
Servais L:
 Department of Paediatrics, MDUK Oxford Neuromuscular Centre and NIHR Oxford Biomedical Research Centre, University of Oxford, Oxford, UK

 Division of Child Neurology, Department of Pediatrics, Centre de Référence Des Maladies Neuromusculaires, University Hospital Liège and University of Liège, Liège, Belgium

Strijbos P:
 F. Hoffmann-La Roche Ltd, Basel, Switzerland

Poleur M:
 Department of Neurology, Centre de Référence Des Maladies Neuromusculaires, Citadelle Hospital Liège and University of Liège, Liège, Belgium

Mirea A:
 University of Medicine and Pharmacy "Carol Davila", Bucharest, Romania

 National Teaching Center for Children's Neurorehabilitation "Dr. Nicolae Robanescu", Bucharest, Romania

Butoianu N:
 Faculty of Medicine and Pharmacy ?Carol Davila?, Pediatric Neurology Clinic, ?Prof. Dr. Al. Obregia? Hospital, Bucharest, Romania

Sansone VA:
 The NeMo Clinical Center, Neurorehabilitation Unit, University of Milan, Milan, Italy

Vuillerot C:
 Department of Pediatric Physical Medicine and Rehabilitation, Hôpital Mère Enfant, CHU-Lyon, Lyon, France

 Neuromyogen Institute, Université de Lyon, Lyon, France

Schara-Schmidt U:
 Department of Pediatric Neurology, Developmental Neurology and Social Pediatrics, Neuromuscular Centre for Children and Adolescents, University of Essen, Essen, Germany

Scoto M:
 Dubowitz Neuromuscular Centre, NIHR Great Ormond Street Hospital Biomedical Research Centre, Great Ormond Street Institute of Child Health, University College London, London, UK

Seferian AM:
 I-Motion, Hopital Trousseau, Paris, France

Previtali SC:
 Neuromuscular Repair Unit, INSPE and Division of Neuroscience, IRCCS Ospedale San Raffaele, Milan, Italy

Tulinius M:
 Department of Pediatrics, Queen Silvia Children's Hospital, University of Gothenburg, Gothenburg, Sweden

Nascimento-Osorio A:
 Neuromuscular Unit, Department of Neurology, Hospital Sant Joan de Déu, Barcelona, Spain

 Applied Research in Neuromuscular Diseases, Institut de Recerca Sant Joan de Déu, Barcelona, Spain

Furlong P:
 Parent Project Muscular Dystrophy, Washington, DC, USA

Singh T:
 Sarepta Therapeutics, Inc, Cambridge, MA, USA

Dreghici RD:
 Solid Biosciences, Boston, MA, USA

Goemans N:
 Neuromuscular Reference Centre, Department of Paediatrics and Child Neurology, University Hospitals Leuven, Leuven, Belgium

Mercuri E:
 Pediatric Neurology, Catholic University, Rome, Italy

 Nemo Pediatrico, Fondazione Policlinico Gemelli IRCCS, Rome, Italy

Straub V:
 John Walton Muscular Dystrophy Research Centre, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK

Ormazabal MG:
 Roche Products Ltd, Welwyn Garden City, UK

Braid J:
 Roche Products Ltd, Welwyn Garden City, UK

Muntoni F:
 Dubowitz Neuromuscular Centre, NIHR Great Ormond Street Hospital Biomedical Research Centre, Great Ormond Street Institute of Child Health, University College London, London, UK

Tricot A:
 SYSNAV, Paris, France

Annoussamy M:
 SYSNAV, Paris, France

Eggenspieler D:
 SYSNAV, Paris, France
ISSN: 20452322





Scientific Reports
Editorial
NATURE PORTFOLIO, HEIDELBERGER PLATZ 3, BERLIN 14197, GERMANY, Reino Unido
Tipo de documento: Article
Volumen: 14 Número: 1
Páginas: 29681-29681
WOS Id: 001367889000038
ID de PubMed: 39613806
imagen Green Submitted, gold

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