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February 04, 2020; 94 (5) ArticleOpen Access

Long‐term follow‐up, quality of life, and survival of patients with Lambert‐Eaton myasthenic syndrome

View ORCID ProfileAlexander F. Lipka, Marion I. Boldingh, Erik W. van Zwet, Marco W.J. Schreurs, Jan B.M. Kuks, Chantal M. Tallaksen, Maarten J. Titulaer, Jan J.G.M. Verschuuren
First published December 12, 2019, DOI: https://doi.org/10.1212/WNL.0000000000008747
Alexander F. Lipka
From the Departments of Neurology (A.F.L., J.J.G.M.V.) and Biostatistics (E.W.v.Z.), Leiden University Medical Center; Department of Neurology (A.F.L.), Groene Hart Hospital, Gouda, the Netherlands; Department of Neurology (M.I.B., C.M.T.), Oslo University Hospital, Norway; Departments of Immunology (M.W.J.S.) and Neurology (M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (J.B.M.K.), University Medical Center Groningen, the Netherlands; and Faculty of Medicine (C.M.T.), University of Oslo, Norway.
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  • ORCID record for Alexander F. Lipka
Marion I. Boldingh
From the Departments of Neurology (A.F.L., J.J.G.M.V.) and Biostatistics (E.W.v.Z.), Leiden University Medical Center; Department of Neurology (A.F.L.), Groene Hart Hospital, Gouda, the Netherlands; Department of Neurology (M.I.B., C.M.T.), Oslo University Hospital, Norway; Departments of Immunology (M.W.J.S.) and Neurology (M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (J.B.M.K.), University Medical Center Groningen, the Netherlands; and Faculty of Medicine (C.M.T.), University of Oslo, Norway.
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Erik W. van Zwet
From the Departments of Neurology (A.F.L., J.J.G.M.V.) and Biostatistics (E.W.v.Z.), Leiden University Medical Center; Department of Neurology (A.F.L.), Groene Hart Hospital, Gouda, the Netherlands; Department of Neurology (M.I.B., C.M.T.), Oslo University Hospital, Norway; Departments of Immunology (M.W.J.S.) and Neurology (M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (J.B.M.K.), University Medical Center Groningen, the Netherlands; and Faculty of Medicine (C.M.T.), University of Oslo, Norway.
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Marco W.J. Schreurs
From the Departments of Neurology (A.F.L., J.J.G.M.V.) and Biostatistics (E.W.v.Z.), Leiden University Medical Center; Department of Neurology (A.F.L.), Groene Hart Hospital, Gouda, the Netherlands; Department of Neurology (M.I.B., C.M.T.), Oslo University Hospital, Norway; Departments of Immunology (M.W.J.S.) and Neurology (M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (J.B.M.K.), University Medical Center Groningen, the Netherlands; and Faculty of Medicine (C.M.T.), University of Oslo, Norway.
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Jan B.M. Kuks
From the Departments of Neurology (A.F.L., J.J.G.M.V.) and Biostatistics (E.W.v.Z.), Leiden University Medical Center; Department of Neurology (A.F.L.), Groene Hart Hospital, Gouda, the Netherlands; Department of Neurology (M.I.B., C.M.T.), Oslo University Hospital, Norway; Departments of Immunology (M.W.J.S.) and Neurology (M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (J.B.M.K.), University Medical Center Groningen, the Netherlands; and Faculty of Medicine (C.M.T.), University of Oslo, Norway.
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Chantal M. Tallaksen
From the Departments of Neurology (A.F.L., J.J.G.M.V.) and Biostatistics (E.W.v.Z.), Leiden University Medical Center; Department of Neurology (A.F.L.), Groene Hart Hospital, Gouda, the Netherlands; Department of Neurology (M.I.B., C.M.T.), Oslo University Hospital, Norway; Departments of Immunology (M.W.J.S.) and Neurology (M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (J.B.M.K.), University Medical Center Groningen, the Netherlands; and Faculty of Medicine (C.M.T.), University of Oslo, Norway.
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Maarten J. Titulaer
From the Departments of Neurology (A.F.L., J.J.G.M.V.) and Biostatistics (E.W.v.Z.), Leiden University Medical Center; Department of Neurology (A.F.L.), Groene Hart Hospital, Gouda, the Netherlands; Department of Neurology (M.I.B., C.M.T.), Oslo University Hospital, Norway; Departments of Immunology (M.W.J.S.) and Neurology (M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (J.B.M.K.), University Medical Center Groningen, the Netherlands; and Faculty of Medicine (C.M.T.), University of Oslo, Norway.
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Jan J.G.M. Verschuuren
From the Departments of Neurology (A.F.L., J.J.G.M.V.) and Biostatistics (E.W.v.Z.), Leiden University Medical Center; Department of Neurology (A.F.L.), Groene Hart Hospital, Gouda, the Netherlands; Department of Neurology (M.I.B., C.M.T.), Oslo University Hospital, Norway; Departments of Immunology (M.W.J.S.) and Neurology (M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (J.B.M.K.), University Medical Center Groningen, the Netherlands; and Faculty of Medicine (C.M.T.), University of Oslo, Norway.
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Long‐term follow‐up, quality of life, and survival of patients with Lambert‐Eaton myasthenic syndrome
Alexander F. Lipka, Marion I. Boldingh, Erik W. van Zwet, Marco W.J. Schreurs, Jan B.M. Kuks, Chantal M. Tallaksen, Maarten J. Titulaer, Jan J.G.M. Verschuuren
Neurology Feb 2020, 94 (5) e511-e520; DOI: 10.1212/WNL.0000000000008747

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  • Long‐term Follow‐up, Quality of Life, and Survival of Patients With Lambert‐Eaton Myasthenic Syndrome - November 30, 2021
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Article Information

vol. 94 no. 5 e511-e520
DOI: 
https://doi.org/10.1212/WNL.0000000000008747
PubMed: 
31831596

Published By: 
Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology
Print ISSN: 
0028-3878
Online ISSN: 
1526-632X
History: 
  • Received April 28, 2019
  • Accepted in final form July 22, 2019
  • First Published December 12, 2019.

Article Versions

  • Previous version (December 12, 2019 - 12:45).
  • You are viewing the most recent version of this article.
Copyright & Usage: 
Copyright © 2019 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology. This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND), which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

Author Disclosures

    1. Alexander F. Lipka, MD,
    2. Marion I. Boldingh, MD, PhD,
    3. Erik W. van Zwet, PhD,
    4. Marco W.J. Schreurs, PhD,
    5. Jan B.M. Kuks, MD, PhD,
    6. Chantal M. Tallaksen, MD, PhD,
    7. Maarten J. Titulaer, MD, PhD and
    8. Jan J.G.M. Verschuuren, MD, PhD
  1. Alexander F. Lipka, MD,
  2. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. NONE

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  3. Marion I. Boldingh, MD, PhD,
  4. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. FP7 frame programme FIGHT MG 242210 2010-2015 Foreningen for muskelsyke 2010-2015

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  5. Erik W. van Zwet, PhD,
  6. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. Statistica Neerlandica co-editor 2015-2017

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. NONE

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  7. Marco W.J. Schreurs, PhD,
  8. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. (1) Thermo Scientific, funding for travel to conference(2) Inova, funding for travel to conference

    Editorial Boards:
    1. (1) Nederlands tijdschrift voor Allergie & Astma, editorial advisory board member, 2015-

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. (1) Combined ophthalmic research, Rotterdam(2) Stichting de Merel, Den Haag(3) Stichting Blindenbelangen, Rotterdam(4) Stichting Lijf en Leven

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  9. Jan B.M. Kuks, MD, PhD,
  10. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. Name: NERVUS (Dutch CME Journal Neurology)Editor in Chief Since 2016

    Patents:
    1. NONE

    Publishing Royalties:
    1. Textbook of clinical NeurologySpringer The Netherlands2018Leerboek klinische neurologieSpringer The NetherlandsFrom 2003

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. NONE

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  11. Chantal M. Tallaksen, MD, PhD,
  12. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. NONE

    Patents:
    1. NONE

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. NONE

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. NONE

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  13. Maarten J. Titulaer, MD, PhD and
  14. Scientific Advisory Boards:
    1. NONE

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. (1) Neurology: Neuroimmunology & Neuroinflammation, since June 2014

    Patents:
    1. (1) filed a patent for

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. NONE

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. (1) Medimmune LLC, research funds for serving on the scientific advisory board; (2) Guidepoint Global LLC, research funds for consultancy; (3) Novartis, research funds for teaching; (4) unrestricted research grant from Euroimmun AG.

    Research Support, Government Entities:
    1. (1) supported by the Netherlands Organisation for Scientific Research (NWO, Veni incentive and Memorabel initiative)

    Research Support, Academic Entities:
    1. (1) Previously supported by an ErasmusMC fellowship

    Research Support, Foundations and Societies:
    1. (1) supported by the Dutch Epilepsy Foundations, projectnumbers 14-19 and 19-08.

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. NONE

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  15. Jan J.G.M. Verschuuren, MD, PhD
  16. Scientific Advisory Boards:
    1. Myasthenia Foundation of America (MGFA) medical/scientific advisory board. Study Steering Committee of Argenx. Advisory meeting for Rapharma. All reimbursements were received by the LUMC.

    Gifts:
    1. NONE

    Funding for Travel or Speaker Honoraria:
    1. NONE

    Editorial Boards:
    1. Journal of Neuromuscular Diseases, member editorial board, 2014-now

    Patents:
    1. Patents on MuSK myasthenia gravis

    Publishing Royalties:
    1. NONE

    Employment, Commercial Entity:
    1. NONE

    Consultancies:
    1. The Neurology department of the LUMC has received fees from Alexion, Argen-X, and Rapharma because of consultancies

    Speakers' Bureaus:
    1. NONE

    Other Activities:
    1. NONE

    Clinical Procedures or Imaging Studies:
    1. NONE

    Research Support, Commercial Entities:
    1. The LUMC received support from Argenx for research on autoimmune myasthenia gravis

    Research Support, Government Entities:
    1. NONE

    Research Support, Academic Entities:
    1. NONE

    Research Support, Foundations and Societies:
    1. Princes Beatrix Spierfonds, grant for MG research, Prinicpal investigator.

    Stock/Stock Options/Board of Directors Compensation:
    1. NONE

    License Fee Payments, Technology or Inventions:
    1. NONE

    Royalty Payments, Technology or Inventions:
    1. The LUMC received royalties for a diagnostic antibody test from TECAN/IBL.

    Stock/Stock Options, Research Sponsor:
    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:
    1. NONE

    Legal Proceedings:
    1. NONE

  1. From the Departments of Neurology (A.F.L., J.J.G.M.V.) and Biostatistics (E.W.v.Z.), Leiden University Medical Center; Department of Neurology (A.F.L.), Groene Hart Hospital, Gouda, the Netherlands; Department of Neurology (M.I.B., C.M.T.), Oslo University Hospital, Norway; Departments of Immunology (M.W.J.S.) and Neurology (M.J.T.), Erasmus University Medical Center, Rotterdam; Department of Neurology (J.B.M.K.), University Medical Center Groningen, the Netherlands; and Faculty of Medicine (C.M.T.), University of Oslo, Norway.
  1. Correspondence
    Dr. Lipka a.f.lipka{at}lumc.nl
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