Recommendations for initiation and cessation of enzyme replacement therapy in patients with Fabry disease: the European Fabry Working Group consensus document.

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Published in Orphanet J Rare Dis on March 27, 2015

Authors

Marieke Biegstraaten1, Reynir Arngrímsson2, Frederic Barbey3, Lut Boks4, Franco Cecchi5, Patrick B Deegan6, Ulla Feldt-Rasmussen7, Tarekegn Geberhiwot8, Dominique P Germain9, Chris Hendriksz10, Derralynn A Hughes11, Ilkka Kantola12, Nesrin Karabul13, Christine Lavery14, Gabor E Linthorst15, Atul Mehta16, Erica van de Mheen17, João P Oliveira18, Rossella Parini19, Uma Ramaswami20, Michael Rudnicki21, Andreas Serra22, Claudia Sommer23, Gere Sunder-Plassmann24, Einar Svarstad25, Annelies Sweeb26, Wim Terryn27, Anna Tylki-Szymanska28, Camilla Tøndel29, Bojan Vujkovac30, Frank Weidemann31, Frits A Wijburg32, Peter Woolfson33, Carla E M Hollak34

Author Affiliations

1: Department of Internal Medicine, Division Endocrinology and Metabolism, Academic Medical Center, PO Box 22660, Amsterdam, 1100 DD, The Netherlands. m.biegstraaten@amc.uva.nl.
2: Biomedical Center, University of Iceland and Landspitali University Hospital, Reykjavík, Iceland. reynirar@landspitali.is.
3: Center of Molecular Diseases, Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland. frederic.barbey@chuv.ch.
4: Fabry International Network (FIN), Amersham, UK. lut@boks.be.
5: Department of Clinical and Experimental Medicine, University of Florence, Florence, Italy. francocecchi337@gmail.com.
6: Department of Medicine, Addenbrooke's Hospital and University of Cambridge, Cambridge, UK. patrick.deegan@addenbrookes.nhs.uk.
7: Department of Medical Endocrinology, Copenhagen University Hospital, Copenhagen, Denmark. Ulla.Feldt-Rasmussen@regionh.dk.
8: Department of Endocrinology, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK. Tarekegn.Geberhiwot@uhb.nhs.uk.
9: Division of Medical Genetics, University of Versailles, Montigny, France. dominique.germain@rpc.aphp.fr.
10: Department of Adult Inherited Metabolic Disorders, Manchester Academic Health Science Centre, Manchester, UK. Chris.Hendriksz@srft.nhs.uk.
11: Department of Haematology, Lysosomal Storage Disorders Unit, Royal Free Hospital, University College London, London, UK. rmgvdah@ucl.ac.uk.
12: Division of Medicine, Turku University Hospital, Turku, Finland. Ilkka.Kantola@tyks.fi.
13: Villa Metabolica, Centre for Paediatric and Adolescent Medicine, Mainz, Germany. Nesrin.Karabul@unimedizin-mainz.de.
14: Fabry International Network (FIN), Amersham, UK. C.Lavery@mpssociety.org.uk.
15: Department of Internal Medicine, Division Endocrinology and Metabolism, Academic Medical Center, PO Box 22660, Amsterdam, 1100 DD, The Netherlands. g.e.linthorst@amc.uva.nl.
16: Department of Haematology, Lysosomal Storage Disorders Unit, Royal Free Hospital, University College London, London, UK. atul.mehta1@nhs.net.
17: Fabry Support and Information Group the Netherlands (FSIGN), Oosterwolde, the Netherlands. erica@fabry.nl.
18: Department of Genetics, University of Porto & São João Hospital Centre, Porto, Portugal. jpo@med.up.pt.
19: Rare Metabolic Diseases Unit, Paediatric Clinic, San Gerardo University Hospital, Monza, Italy. rossella.parini@unimib.it.
20: Lysosomal Disorders Unit, Institute of Immunity and Transplantation, Royal Free Hospital, London, UK. uma.ramaswami@nhs.net.
21: Department of Internal Medicine IV, Division Nephrology and Hypertension, Medical University Innsbruck, Innsbruck, Austria. michael.rudnicki@i-med.ac.at.
22: Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. a.serra@gmx.ch.
23: Department of Neurology, University of Würzburg, Würzburg, Germany. sommer@uni-wuerzburg.de.
24: Department of Medicine III, Division Nephrology and Dialysis, Medical University of Vienna, Vienna, Austria. Gere.Sunder-Plassmann@meduniwien.ac.at.
25: Department of Medicine, Haukeland University Hospital and Department of Clinical Medicine, University of Bergen, Bergen, Norway. Einar.Svarstad@k1.uib.no.
26: Fabry Support and Information Group the Netherlands (FSIGN), Oosterwolde, the Netherlands. asweeb@xs4all.nl.
27: Department of Internal Medicine, Division of Nephrology, Ghent University Hospital, Ghent, Belgium. wim.terryn@gmail.com.
28: Department of Paediatrics, Nutrition and Metabolic Diseases, The Children's Memorial Health Institute, Warsaw, Poland. atylki@op.pl.
29: Clinical Trial Unit/Department of Paediatrics, Haukeland University Hospital, Bergen, Norway. Camilla.Tondel@k1.uib.no.
30: General Hospital Slovenj Gradec, Slovenj Gradec, Slovenia. bojan.vujkovac@guest.arnes.si.
31: Innere Klinik II, Katharinen Hospital Unna, Unna, Germany. f.weidemann@katharinen-hospital.de.
32: Department of Paediatrics, Academic Medical Center, Amsterdam, The Netherlands. f.a.wijburg@amc.uva.nl.
33: Department of Cardiology, Salford Royal Hospital NHS Foundation Trust, Manchester, UK. Peter.Woolfson@srft.nhs.uk.
34: Department of Internal Medicine, Division Endocrinology and Metabolism, Academic Medical Center, PO Box 22660, Amsterdam, 1100 DD, The Netherlands. c.e.hollak@amc.uva.nl.

Associated clinical trials:

A Study of Two Fabrazyme (Agalsidase Beta) Dosing Regimens in Treatment-naïve, Male Pediatric Patients Without Severe Symptoms (FIELD) | NCT00701415

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