Real-life effectiveness 1 year after switching to avalglucosidase alfa in late-onset Pompe disease patients worsening on alglucosidase alfa therapy: A French cohort study.

enzymotherapy glycogenosis switch treatment management unmet needs

Journal

European journal of neurology
ISSN: 1468-1331
Titre abrégé: Eur J Neurol
Pays: England
ID NLM: 9506311

Informations de publication

Date de publication:
08 Apr 2024
Historique:
revised: 17 02 2024
received: 10 01 2024
accepted: 14 03 2024
medline: 8 4 2024
pubmed: 8 4 2024
entrez: 8 4 2024
Statut: aheadofprint

Résumé

Late-onset Pompe disease (LOPD) is characterized by a progressive myopathy resulting from a deficiency of acid α-glucosidase enzyme activity. Enzyme replacement therapy has been shown to be effective, but long-term treatment results vary. Avalglucosidase alfa demonstrated non-inferiority to alglucosidase alfa in a phase 3 study, allowing in France compassionate access for advanced LOPD patients unresponsive to alglucosidase alfa. Data from the French Pompe registry were analyzed for patients who benefited from a switch to avalglucosidase alfa with at least 1 year of follow-up. Respiratory (forced vital capacity [FVC]) and motor functions (Six-Minute Walk Test [6MWT]) were assessed before and 1 year after switching. Individual changes in FVC and 6MWT were expressed as slopes and statistical analyses were performed to compare values. Twenty-nine patients were included (mean age 56 years, 11 years of prior treatment). The FVC and 6MWT values remained stable. The individual analyses showed a stabilization of motor worsening: -1 m/year on the 6MWT after the switch versus -63 m/year the year before the switch (i.e., a worsening of 33%/year before vs. an improvement of 3%/year later). Respiratory data were not statistically different. At the group level, gait parameters improved slightly with a stabilization of previous worsening, but respiratory parameters showed limited changes. At the individual level, results were discordant, with some patients with a good motor or respiratory response and some with further worsening. Switching to avalglucosidase alfa demonstrated varied responses in advanced LOPD patients with failing alglucosidase alfa therapy, with a general improvement in motor stabilization.

Identifiants

pubmed: 38587143
doi: 10.1111/ene.16292
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

e16292

Subventions

Organisme : Amicus Therapeutics
Organisme : Sanofi

Investigateurs

D Orlikowski (D)
M Masingue (M)
T Stojkovic (T)
A Béhin (A)
P Y Garcia (PY)
F Lallement (F)
G Bassez (G)
D Germain (D)
L Kouton (L)
A Verschueren (A)
A Furby (A)
A L Kaminsky (AL)
A Lacour (A)
J Praline (J)
G Sole (G)
F Duval (F)
F Bouibede (F)
F Chapon (F)
M C Minot (MC)
J Hubert (J)
Y Pereon (Y)
B Acket (B)
A Nadaj-Pakleza (A)
R J Morales (RJ)
F Esselin (F)
P Petiot (P)
R Jaussaud (R)
S Mohamed (S)
Y A Echaniz-Laguna (YA)
L Magy (L)
E Krim (E)
F Taithe (F)
A L Bedat-Millet (AL)
S Toquet (S)
E Diab (E)
M Maillet-Vioud (M)

Informations de copyright

© 2024 The Authors. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.

Références

Semplicini C, Letard P, De Antonio M, et al. Late‐onset Pompe disease in France: molecular features and epidemiology from a nationwide study. J Inherit Metab Dis. 2018;41:937‐946. doi:10.1007/s10545-018-0243-7
Harlaar L, Hogrel J‐Y, Perniconi B, et al. Large variation in effects during 10 years of enzyme therapy in adults with Pompe disease. Neurology. 2019;93:e1756‐e1767. doi:10.1212/WNL.0000000000008441
Kuperus E, Kruijshaar ME, Wens SCA, et al. Long‐term benefit of enzyme replacement therapy in Pompe disease: a 5‐year prospective study. Neurology. 2017;89:2365‐2373. doi:10.1212/WNL.0000000000004711
Schoser B, Stewart A, Kanters S, et al. Survival and long‐term outcomes in late‐onset Pompe disease following alglucosidase alfa treatment: a systematic review and meta‐analysis. J Neurol. 2017;264:621‐630. doi:10.1007/s00415-016-8219-8
Togawa T, Takada M, Aizawa Y, Tsukimura T, Chiba Y, Sakuraba H. Comparative study on mannose 6‐phosphate residue contents of recombinant lysosomal enzymes. Mol Genet Metab. 2014;111:369‐373. doi:10.1016/j.ymgme.2013.12.296
Zhu Y, Jiang J‐L, Gumlaw NK, et al. Glycoengineered acid alpha‐glucosidase with improved efficacy at correcting the metabolic aberrations and motor function deficits in a mouse model of Pompe disease. Mol Ther. 2009;17:954‐963. doi:10.1038/mt.2009.37
Zhu Y, Li X, McVie‐Wylie A, et al. Carbohydrate‐remodelled acid alpha‐glucosidase with higher affinity for the cation‐independent mannose 6‐phosphate receptor demonstrates improved delivery to muscles of Pompe mice. Biochem J. 2005;389:619‐628. doi:10.1042/BJ20050364
Diaz‐Manera J, Kishnani PS, Kushlaf H, et al. Safety and efficacy of avalglucosidase alfa versus alglucosidase alfa in patients with late‐onset Pompe disease (COMET): a phase 3, randomised, multicentre trial. Lancet Neurol. 2021;20:1012‐1026. doi:10.1016/S1474-4422(21)00241-6
Lefeuvre C, De Antonio M, Bouhour F, et al. Characteristics of patients with late‐onset Pompe disease in France: insights from the French Pompe registry in 2022. Neurology. 2023;101:e966‐e977. doi:10.1212/WNL.0000000000207547
van der Ploeg AT, Clemens PR, Corzo D, et al. A randomized study of alglucosidase alfa in late‐onset Pompe's disease. N Engl J Med. 2010;362:1396‐1406. doi:10.1056/NEJMoa0909859
Olschewski H, Simonneau G, Galiè N, et al. Inhaled iloprost for severe pulmonary hypertension. N Engl J Med. 2002;347:322‐329. doi:10.1056/NEJMoa020204
Harari S, Wells AU, Wuyts WA, et al. The 6‐min walk test as a primary end‐point in interstitial lung disease. Eur Respir Rev. 2022;31:220087. doi:10.1183/16000617.0087-2022
Lika A, Andrinopoulou E‐R, van der Beek NAME, Rizopoulos D, van der Ploeg AT, Kruijshaar ME. Association between changes in pulmonary function and in patient reported outcomes during enzyme therapy of adult patients with late‐onset Pompe disease. J Inherit Metab Dis. 2023;46:595‐604. doi:10.1002/jimd.12606
Farah BL, Yen PM, Koeberl DD. Links between autophagy and disorders of glycogen metabolism ‐ perspectives on pathogenesis and possible treatments. Mol Genet Metab. 2020;129:3‐12. doi:10.1016/j.ymgme.2019.11.005
Lim J‐A, Li L, Raben N. Pompe disease: from pathophysiology to therapy and back again. Front Aging Neurosci. 2014;6:177. doi:10.3389/fnagi.2014.00177

Auteurs

Céline Tard (C)

Inserm, CHU Lille, U1172 - LilNCog - Lille Neuroscience and Cognition, University of Lille, Lille, France.
Centre de Référence des Maladies NeuroMusculaires Nord - Est - Ile-de-France, Filnemus, Garches, France.

Françoise Bouhour (F)

Centre de Référence des Maladies NeuroMusculaires PACA Réunion Rhône Alpes, Filnemus, Marseille, France.
Service ENMG/Pathologies Neuromusculaires, Hospices Civils de Lyon, Lyon, France.

Maud Michaud (M)

Centre de Référence des Maladies NeuroMusculaires Nord - Est - Ile-de-France, Filnemus, Garches, France.
Service de Neurologie, CHU de Nancy, Nancy, France.

Stephane Beltran (S)

Service de Neurologie, CHRU Bretonneau, Tours, France.

Maxime Fournier (M)

Centre de Référence des Maladies NeuroMusculaires Nord - Est - Ile-de-France, Filnemus, Garches, France.
CHU de Caen, Caen, France.

Florence Demurger (F)

Service de Génétique, CHBA, Vannes, France.

Emmeline Lagrange (E)

Rare Neuromuscular Disease Center EFSN Neurology Grenoble University Alpes Hospital, Grenoble, France.

Sylvain Nollet (S)

Centre de Référence des Maladies NeuroMusculaires Nord - Est - Ile-de-France, Filnemus, Garches, France.
Neurologie Electrophysiologie Clinique, CHRU Besançon, Besançon, France.

Sabrina Sacconi (S)

Centre Hospitalier Universitaire de Nice, Système Nerveux Périphérique and Muscle, Hôpital Pasteur 2, Université Côte d'Azur, Nice, France.

Jean-Baptiste Noury (JB)

Centre de Référence des Maladies NeuroMusculaires AOC, Filnemus, Bordeaux, France.
Inserm, LBAI, UMR1227, CHRU de Brest, Brest, France.

Armelle Magot (A)

Centre de Référence des Maladies NeuroMusculaires AOC, Filnemus, Bordeaux, France.
Euro-NMD, CHU de Nantes, Nantes, France.

Pascal Cintas (P)

CHU Toulouse, Toulouse, France.

Dimitri Renard (D)

Centre de Référence des Maladies NeuroMusculaires AOC, Filnemus, Bordeaux, France.
CHU Nîmes, Université Montpellier, Montpellier, France.

Joëlle Deibener-Kaminsky (J)

Service de Médecine Interne et Immunologie Clinique, CHU Nancy Brabois, Vandœuvre-lès-Nancy, France.

Claire Lefeuvre (C)

Centre de Référence des Maladies NeuroMusculaires Nord - Est - Ile-de-France, Filnemus, Garches, France.
Neurology Department, APHP, Raymond Poincaré University Hospital, FHU PHENIX, Garches, France.

Jean-Baptiste Davion (JB)

Inserm, CHU Lille, U1172 - LilNCog - Lille Neuroscience and Cognition, University of Lille, Lille, France.
Centre de Référence des Maladies NeuroMusculaires Nord - Est - Ile-de-France, Filnemus, Garches, France.

Emmanuelle Salort-Campana (E)

Centre de Référence des Maladies NeuroMusculaires PACA Réunion Rhône Alpes, Filnemus, Marseille, France.
Service de Neurologie du Professor Attarian, ERN Neuro-NMD, La Timone, Marseille, France.

Azzeddine Arrassi (A)

Institut de Myologie, Hôpital La Pitié-Salpétrière, FHU PHENIX, AP-HP, Paris, France.

Nadjib Taouagh (N)

Centre de Référence des Maladies NeuroMusculaires Nord - Est - Ile-de-France, Filnemus, Garches, France.
Neurology Department, APHP, Raymond Poincaré University Hospital, FHU PHENIX, Garches, France.

Marco Spinazzi (M)

Neuromuscular Reference Center, Department of Neurology, CHU d'Angers, Angers, France.

Shahram Attarian (S)

Centre de Référence des Maladies NeuroMusculaires PACA Réunion Rhône Alpes, Filnemus, Marseille, France.
Service de Neurologie du Professor Attarian, ERN Neuro-NMD, La Timone, Marseille, France.

Pascal Laforêt (P)

Centre de Référence des Maladies NeuroMusculaires Nord - Est - Ile-de-France, Filnemus, Garches, France.
Neurology Department, APHP, Raymond Poincaré University Hospital, FHU PHENIX, Garches, France.

Classifications MeSH