Low-dose agalsidase beta treatment in male pediatric patients with Fabry disease: A 5-year randomized controlled trial.


Journal

Molecular genetics and metabolism
ISSN: 1096-7206
Titre abrégé: Mol Genet Metab
Pays: United States
ID NLM: 9805456

Informations de publication

Date de publication:
05 2019
Historique:
received: 13 12 2018
revised: 06 03 2019
accepted: 30 03 2019
pubmed: 17 4 2019
medline: 16 11 2019
entrez: 17 4 2019
Statut: ppublish

Résumé

Fabry disease is a rare, X-linked, lifelong progressive lysosomal storage disorder. Severely deficient α-galactosidase A activity in males is associated with the classic phenotype with early-onset, multisystem manifestations evolving to vital organ complications during adulthood. We assessed the ability of 2 low-dose agalsidase beta regimens to lower skin, plasma, and urine globotriaosylceramide (GL-3) levels, and influence clinical manifestations in male pediatric Fabry patients. In this multicenter, open-label, parallel-group, phase 3b study, male patients aged 5-18 years were randomized to receive agalsidase beta at 0.5 mg/kg 2-weekly (n = 16) or 1.0 mg/kg 4-weekly (n = 15) for 5 years. All had plasma/urine GL-3 accumulation but no clinically evident organ involvement. The primary outcome was GL-3 accumulation in superficial skin capillary endothelium (SSCE). The mean age was 11.6 (range: 5-18) years and all but one of the 31 patients had classic GLA mutations. In the overall cohort, shifts from non-0 to 0-scores for SSCE GL-3 were significant at years 1, 3, and 5, but results were variable. Plasma GL-3 normalized and urine GL-3 reduced substantially. Higher anti-agalsidase beta antibody titers were associated with less robust SSCE GL-3 clearance and higher urine GL-3 levels. Renal function remained stable and normal. Most Fabry signs and symptoms tended to stabilize; abdominal pain was significantly reduced (-26.3%; P = .0215). No new clinical major organ complications were observed. GL-3 accumulation and cellular and vascular injury were present in baseline kidney biopsies (n = 7). Treatment effects on podocyte GL-3 content and foot process width were highly variable. Fabry arteriopathy overall increased in severity. Two patients withdrew and 2 had their agalsidase beta dose increased. Our findings increase the limited amount of available data on long-term effects of enzyme replacement therapy in pediatric, classic Fabry patients. The low-dose regimens studied here over a period of 5 years did not demonstrate a consistent benefit among the patients in terms of controlling symptomatology, urine GL-3 levels, and pathological histology. The current available evidence supports treatment of pediatric, classic male Fabry patients at the approved agalsidase beta dose of 1.0 mg/kg 2-weekly if these patients are considered for enzyme replacement therapy with agalsidase beta.

Sections du résumé

BACKGROUND
Fabry disease is a rare, X-linked, lifelong progressive lysosomal storage disorder. Severely deficient α-galactosidase A activity in males is associated with the classic phenotype with early-onset, multisystem manifestations evolving to vital organ complications during adulthood. We assessed the ability of 2 low-dose agalsidase beta regimens to lower skin, plasma, and urine globotriaosylceramide (GL-3) levels, and influence clinical manifestations in male pediatric Fabry patients.
METHODS
In this multicenter, open-label, parallel-group, phase 3b study, male patients aged 5-18 years were randomized to receive agalsidase beta at 0.5 mg/kg 2-weekly (n = 16) or 1.0 mg/kg 4-weekly (n = 15) for 5 years. All had plasma/urine GL-3 accumulation but no clinically evident organ involvement. The primary outcome was GL-3 accumulation in superficial skin capillary endothelium (SSCE).
RESULTS
The mean age was 11.6 (range: 5-18) years and all but one of the 31 patients had classic GLA mutations. In the overall cohort, shifts from non-0 to 0-scores for SSCE GL-3 were significant at years 1, 3, and 5, but results were variable. Plasma GL-3 normalized and urine GL-3 reduced substantially. Higher anti-agalsidase beta antibody titers were associated with less robust SSCE GL-3 clearance and higher urine GL-3 levels. Renal function remained stable and normal. Most Fabry signs and symptoms tended to stabilize; abdominal pain was significantly reduced (-26.3%; P = .0215). No new clinical major organ complications were observed. GL-3 accumulation and cellular and vascular injury were present in baseline kidney biopsies (n = 7). Treatment effects on podocyte GL-3 content and foot process width were highly variable. Fabry arteriopathy overall increased in severity. Two patients withdrew and 2 had their agalsidase beta dose increased.
CONCLUSIONS
Our findings increase the limited amount of available data on long-term effects of enzyme replacement therapy in pediatric, classic Fabry patients. The low-dose regimens studied here over a period of 5 years did not demonstrate a consistent benefit among the patients in terms of controlling symptomatology, urine GL-3 levels, and pathological histology. The current available evidence supports treatment of pediatric, classic male Fabry patients at the approved agalsidase beta dose of 1.0 mg/kg 2-weekly if these patients are considered for enzyme replacement therapy with agalsidase beta.

Identifiants

pubmed: 30987917
pii: S1096-7192(18)30766-2
doi: 10.1016/j.ymgme.2019.03.010
pii:
doi:

Substances chimiques

Isoenzymes 0
Trihexosylceramides 0
globotriaosylceramide 71965-57-6
alpha-Galactosidase EC 3.2.1.22
agalsidase beta RZD65TSM9U

Types de publication

Clinical Trial, Phase III Journal Article Multicenter Study Randomized Controlled Trial Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

86-94

Informations de copyright

Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.

Auteurs

Uma Ramaswami (U)

Lysosomal Disorders Unit, Institute of Immunity and Transplantation, Royal Free London NHS Foundation Trust, University College of London, London, United Kingdom. Electronic address: uma.ramaswami@nhs.net.

Daniel G Bichet (DG)

Nephrology Service, Research Center, Hôpital du Sacré-Coeur de Montréal and University of Montreal, Montreal, QC, Canada.

Lorne A Clarke (LA)

Child and Family Research Institute, University of British Columbia, Vancouver, BC, Canada.

Gabriela Dostalova (G)

2nd Department of Internal Medicine and Department of Cardiovascular Medicine, Charles University Prague, General University Hospital Prague, Prague, Czech Republic.

Alejandro Fainboim (A)

Hospital de Niños Ricardo Gutierrez, Hospital de Dia Polivalente, Ciudad Autónoma de Buenos Aires, Buenos Aires, Argentina.

Andreas Fellgiebel (A)

Department of Psychiatry and Psychotherapy, University Medical Center Mainz, Mainz, Germany.

Cassiano M Forcelini (CM)

Faculty of Medicine, Universidade de Passo Fundo, and Hospital São Vicente de Paulo, Passo Fundo, RS, Brazil.

Kristina An Haack (K)

Sanofi Genzyme, Chilly-Mazarin, France.

Robert J Hopkin (RJ)

Division of Human Genetics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College Medicine, Cincinnati, OH, USA.

Michael Mauer (M)

Departments of Pediatrics and Medicine, University of Minnesota, Minneapolis, MN, USA.

Behzad Najafian (B)

Department of Pathology, University of Washington, Seattle, WA, USA.

C Ronald Scott (CR)

Division of Genetic Medicine, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.

Suma P Shankar (SP)

Departments of Human Genetics and Ophthalmology, Emory University School of Medicine, Decatur, GA, USA.

Beth L Thurberg (BL)

Sanofi Genzyme, Framingham, MA, USA.

Camilla Tøndel (C)

Departments of Pediatrics and Clinical Medicine, Haukeland University Hospital, Bergen, Norway.

Anna Tylki-Szymanska (A)

Department of Pediatric Nutrition and Metabolic Diseases, The Children's Memorial Health Institute, Warsaw, Poland.

Bernard Bénichou (B)

Formerly Sanofi Genzyme, Saint-Germain-en-Laye Cedex, France.

Frits A Wijburg (FA)

Department of Pediatric Metabolic Diseases, Emma Children's Hospital and Amsterdam Lysosome Center "Sphinx", Academic Medical Center, University Hospital of Amsterdam, Amsterdam, the Netherlands.

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Classifications MeSH