Author(s): Donald B. Sanders , MD, Gil I. Wolfe , MD, Michael Benatar , MD, PhD, Amelia Evoli , MD, Nils E. Gilhus , MD, Isabel Illa , MD, Nancy Kuntz , MD, Janice M. Massey , MD, Arthur Melms , MD, Hiroyuki Murai , MD, Michael Nicolle , MD, Jacqueline Palace , BM, DM, David P. Richman , MD, Jan Verschuuren , MD, Pushpa Narayanaswami , MBBS, DM
Publication date PMC-release: 26 July 2016
Publisher: Lippincott Williams & Wilkins
In October 2013, the Myasthenia Gravis Foundation of America appointed a Task Force to develop treatment guidance for MG, and a panel of 15 international experts was convened. The RAND/UCLA appropriateness methodology was used to develop consensus guidance statements. Definitions were developed for goals of treatment, minimal manifestations, remission, ocular MG, impending crisis, crisis, and refractory MG. An in-person panel meeting then determined 7 treatment topics to be addressed. Initial guidance statements were developed from literature summaries. Three rounds of anonymous e-mail votes were used to attain consensus on guidance statements modified on the basis of panel input.
Guidance statements were developed for symptomatic and immunosuppressive treatments, IV immunoglobulin and plasma exchange, management of impending and manifest myasthenic crisis, thymectomy, juvenile MG, MG associated with antibodies to muscle-specific tyrosine kinase, and MG in pregnancy.
1. ArGen-X 2. Jacobus Pharmaceutical Co., Inc 3. Modus Outcomes 4. Momenta Pharmaceuticals, Inc. 5. UCB Celltech
(1)Grifols scientific advisory board (2)Baxalta scientific advisory board (3) Argen X scientific advisory board (4) UCB scientific advisory board
(1) Grifols speaker honoraria (2) Baxalta speaker honoraria
(1) Eli Lilly, (2) Sclerosi Laterale Amiotrofica (AriSLA, (3) Congressionally Directed Medical Research Program (CDMRP) ALS Research Program Integration Panel
(1) Food and Drug Administration (R01 FD003710, R01 FD003517) (2) National Institutes of Health (U10 NS077423, U54 NS092091) (3) Department of Defense (DOD11188144)
Served on a scientific advisory board for UCB Biosciences GmbH and for CSL Berhing
Received speaker's honoraria from Octapharma, Baxter, and MerckSerono
(1) FIS (Fondo de Investigaciones Sanitarias), ISCIII, Ministry of Health (Spain), #13/00937, PI, 3 years
Dr. Kuntz has served on scientific advisory boards for BioGen Idec, Sarepta Pharmaceuticals, Marathon Pharmaceuticals and Cytokinetics.
(1) Cooperative International Neuromuscular Research Group/DOD and NIH, site investigator, 2010-present
(1) non-profit entity German Myasthenia Gravis Association (2) commercial entity UCB S.A. (3) commercial entity Alexion Pharmaceuticals Inc. (4) commercial entity Moleac Pte Ltd, SINGAPORE
(1) non-profit entity speaker honoraria from the German Society of Clinical Neurophysiology (2) commercial entity travel funding from Biogen (3) commercial entity travel support from Merz
Medical director of a privately owned neurological rehabilitation hospital until June, 2015
Professor of Neurology and Neurorehabilitation at the University of Erlangen, Germany (20%), medical director of a privately owned neurological rehabilitation hospital(80%, unitil June 2015), clinical practice (80%, from July 2015)
(1) Academic entity University of Erlangen-Nuremberg, Erlangen, Germany
(1) BMC Neurology, associate editor, 6 years (2) Clinical and Experimental Neuroimmunology, 4 years
(1) Biogen (2) Novartis (3) Bayer (4) Tanabe Mitsubishi (5) Japan Blood Products Organization
UK advisory board participant: 1) Merck Serono 2) Bayer Schering Pharma 3) Biogen Idec 4) Teva Pharmaceutical Industries Ltd. 5) Sanofi-Aventis 6) Alexion
Support for attending ECTRIMS Merck Serono Novartis and Biogen idec Talks at scientific meetings (majority have CME) Bayer schering, Biogen Idec, Merk Serono, Medimmune
(1) ISIS innovation Limited, a wholly-owned subsidiary of the University of Oxford, has filed a patent application (WO2013/117930 A2) to protect for the use of metabolomics as a method to diagnose and stage disease in multiple sclerosis.
In addition to advisory committees, consultant for: Ono Pharmaceuticals Ltd. Chugai Pharma Ltd. CI Consulting Biogen Idec GlaxoSmithKline Alexion
Conference donations: Alexion Chugai EuroImmune MedImmune Genzyme Novartis Biogen Merck Serono MS Society
Donations to support local service development and research, none relevant to the current work: Biogen Merck Serono Teva
Department of Health Risk Sharing Scheme, Clinical Coordinator since 2002 Department of Health funding for a neuromyelitis optica service and a congenital myasthenia service
Muscular Dystrophy Association of America (255526), The Myasthenia Gravis Foundation of California and the Myasthenia Gravis Foundation of Illinois.
Trial support by Biomarin. Role: Subinvestigator in international Duchenne trials on exon skipping. Trial suport from Lilly. Role subinvestigator in Duchenne muscular dystrophy trial
Princes Beatrix Spierfonds, grant for MG research, Prinicpal investigator. Princes Beatrix Spierfonds, grant for neuromuscular epidemiological research, Pricipal investigator Assocation Francaise contre les Myopathies (AFM), support for studies on MuSK myasthenia gravis AFM, support for studies on Duchenne muscular dystrophy European Union, partner in 3 FP7 grants . Two on Duchennen muscular dystrophy and one on myasthenia gravis
IBL for MuSK ELISA. All payments to the LUMC. No personnal reimbursements
1. AAN: Honorarium for development of neuro PI module 2. Rhode Island Neurological Society: Honorarium for speaking at annual meeting of the society 3. CA Neurological society: Honorarium for speaking at annual meeting of Society
1. Neurology. Level of Evidence Review Team 2012-2. Journal of Clinical neuromuscular Disease. Member, Editorial Board 2012-
1. Commercial entity: Blue Cross Blue Shield of Massachusetts, Pharmacy and Therapeutics Committee 2. Commercial entity: Advanced Medical. 3. Commercial entity: Boston Clinical Research Institute.
Received NIH/NINDS: K24NS060951-01A1, Co-investigator, 2008-2013 Received AHRQ 1R18HS022004-01, Primary Investigator, 2013-2014
Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article. The Article Processing Charge was paid by the Myasthenia Gravis Foundation of America.
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