Diagnosis and Management of Opsoclonus-Myoclonus-Ataxia Syndrome in Children
An International Perspective
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Article Information
- Received November 4, 2021
- Accepted in final form January 18, 2022
- First Published March 8, 2022.
Author Disclosures
- Thomas Rossor, PhD (trossor{at}nhs.net),
- E. Ann Yeh, MD (ann.yeh{at}sickkids.ca),
- Yasmin Khakoo, MD (khakooy{at}mskcc.org),
- Paola Angelini, MD (paola.angelini{at}nhs.net),
- Cheryl Hemingway, PhD (cheryl.hemingway{at}gosh.nhs.uk),
- Sarosh R. Irani, MD, DPhil (sarosh.irani{at}ndcn.ox.ac.uk),
- Gudrun Schleiermacher, PhD (gudrun.schleiermacher{at}curie.fr),
- Paramala Santosh, PhD (paramala.1.santosh{at}kcl.ac.uk),
- Tim Lotze, MD (tlotze{at}bcm.edu),
- Russell C. Dale, PhD (russell.dale{at}health.nsw.gov.au),
- Kumaran Deiva, PhD (kumaran.deiva{at}aphp.fr),
- Barbara Hero, PhD (barbara.hero{at}uk-koeln.de),
- Andrea Klein, PhD (andrea.klein{at}ukbb.ch),
- Pedro de Alarcon, PhD (pdealarc{at}uic.edu),
- Mark P. Gorman, PhD (mark.gorman{at}childrens.harvard.edu),
- Wendy G. Mitchell, PhD (wmitchell{at}chla.usc.edu) and
- Ming Lim, MD, PhD
- on behalf of the OMS Study Group
- Thomas Rossor, PhD (trossor{at}nhs.net),
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- E. Ann Yeh, MD (ann.yeh{at}sickkids.ca),
Juno therapeutics scientific advisory board 2017 Biogen, scientific advisory board 2019 Hoffman-Laroche, scientific advisory board 2021
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Neurology, editorial advisory board, 2013-present. MSJ editorial board 2016-present BMC Neurology editorial board 2016-present PLOS-One: Editorial board, 2018-present MSARD: Editorial Board 2019-present, co-chief editor 2021- present
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PRIME (non profit entity, 2021) Novartis (neuro on the go educational podcast, 2022)
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(1) Biogen, funding for investigator-initiated research.
1) CIHR, Co-I. PI: Pohl 2) PCORI, Co-I, CE-1304-7079 3) CMSMS (CIHI/PHAC), MS Monitoring system pilot funding 4)SCN: co-PI, 2015-present 5)OIRM, co-PI, 2015-present, PI, 2019-present
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1) National MS Society HC 0148 2) National MS Society PP2256 3) MS Society (Canada) 4) Dairy Farmers of Ontario 5) SickKids Innovation Fund 6) MS Research Foundation (Canada) 7) Rare Diseases Foundation
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- Yasmin Khakoo, MD (khakooy{at}mskcc.org),
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Pediatric Neurology, Editor-in-Chief, 2022-
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National Cancer Institute, Cancer Center Core grant number P30-CA008748. Spouse: Robert P. Fisher, MD, PhD NIH R35-GM127289 04/01/18-03/31/23 (PI) RPF R01-AI148129 Rogatsky (PI) RPF (co-I) 12/23/19-11/30/24
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Nevus Outreach, Inc OMSLife
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- Paola Angelini, MD (paola.angelini{at}nhs.net),
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(1) Frontiers in oncology, Guest Editor, 2020
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- Cheryl Hemingway, PhD (cheryl.hemingway{at}gosh.nhs.uk),
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1) Commercial: Novartis honorarium speaker contract
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1) Commercial: Novartis steering committee for Paediatric MS trial design 2) Commercial: Biogen steering committee for Paediatric MS trial design 3) Commercial: Roche steering committee for Paediatric demyelination trial design 4) Commercial: UCB consulting on MOG antibody disorders 5) Commercial: VielaBio consulting on AQP4 antibody disorders
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MRC Research grant for Paediatric MS Treatment response
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- Sarosh R. Irani, MD, DPhil (sarosh.irani{at}ndcn.ox.ac.uk),
Encephalitis Society and Autoimmune Encephalitis Alliance (non-profit, charity). ADC therapeutics, Immunovant and UCB (commercial)
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SRI has received honoraria for speaking at scientific conferences, including the Movement Disorder Society, Dublin Neuroimunology Symposium, Korean Encephalitis meeting and Bethel Epilepsy Symposium.
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SRI receives royalties on patent application WO/2010/046716 entitled 'Neurological Autoimmune Disorders'. The patent has been licensed for the development of assays for LGI1 and other VGKC-complex antibodies.
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1. Commercial. MedImmune Ltd. 2. ADCT 3. Minnetronix Neuro Inc 4. UCB Pharma 5. Medicolegal projects (various)
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Commercial: SRI has received research funding from UCB, CSL Behring and ONO pharmaceuticals
S.R.I has received a NIHR fellowship, Department of Health, UK to fund his DPhil/PhD
SRI received funding support from a MRC Senior Clinical Fellowship, Wellcome Intermediate Clinical Fellowship, BMA Research Grants - Vera Down grant, the Fulbright UK-US commission and the MS society (2012-2013).
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For VGKC-complex antibody patent, as described above. Royalties paid by OUI.
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- Gudrun Schleiermacher, PhD (gudrun.schleiermacher{at}curie.fr),
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Roche, funding for travel to AACR meeting
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BMS, speaker at a national event MSDavenir, speaker at a national event
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Bristol-Myers Squibb Pfizer MSDavenir Roche
INCa, France
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Annenberg Foundation, USA Association Hubert Gouin, France Imagine for Margo, France
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- Paramala Santosh, PhD (paramala.1.santosh{at}kcl.ac.uk),
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I was the specialist Editor for mental health section of BMC Paediatrics till 2020.
I am the CEO of HealthTracker Ltd which created a health monitoring platform. The platform allows for symptom, side effect monitoring.
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1) Consultancy fees from Anavex Scientific Corp, for advising regarding a clinical trial. 2) Consultancy fees from GW Pharma for advising regarding a clinical trial.
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I am Head of the Centre for Paediatric Psychopharmacology and Rare Diseases; and also the CIPP Rett Centre.
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1) Clinical Trial Grant  Anavex Life Sciences Corp. (2020 - 2022): (£400,000) (Principal Investigator). A Double-Blind, Randomised, Placebo-Controlled, Safety and Efficacy of ANAVEX2-73 in Patients with Rett Syndrome, Protocol Number: ANAVEX2-73-RS-002, Anavex Germany GmbH, Am Klopferspitz 19a, 82152 Planegg, Germany. 2) Clinical Trial Grant - Newron Pharmaceuticals (2017 - 2020): (£1,380,000) (Principal Investigator). A Randomized, Double-Blind, Placebo-Controlled, Six- Month Study to Evaluate the Efficacy, Safety and Tolerability of Sarizotan in Patients with RETT Syndrome with Respiratory Symptoms, Protocol Number: Sarizotan/001/II/2015, Newron Pharmaceuticals SpA, via Ludovico Ariosto 21, 20091 Bresso (Milan) Italy.
1) ADHD TNS Clinical Trial, NIHR funded, PI. 2) NHS England (2015): (£48,000) (Co-applicant from HealthTracker Ltd). Developing a patient experience measure of 4-10 year old inpatients. (2/2015 - 6/2015). 3) NIHR Programme Grants for Applied Research (PGfAR) (2014): (£2,000,000) (Co-applicant). Improving outcomes for people with autism by reducing mental health problems. 4) FP7 Cooperation Work Programme HEALTH.2012: (Â6,000,000) (Principal Investigator and co-applicant). Managing the Link and Strengthening Transition from Child to Adult Mental Health Care  MILESTONE. I am a Principal Investigator and lead of an important Work Package. 5) FP7 Cooperation Work Programme HEALTH.2012: (Â4,500,000) (Principal Investigator and co-applicant). Multidisciplinary Approaches to Translational Research In Conduct Syndromes  MATRICS. 6) FP7 Cooperation Work Programme HEALTH.2012: (Â6,000,000) (Principal Investigator and co-applicant). Aggression subtyping for improved insight and treatment innovation in paediatric psychiatric disorders  AGGRESSOTYPE. 7) European Union FP7-HEALTH-2009-single-stage Grant (2010): ÂHEALTH- 2010-4.2-3: Adverse drug reaction research. (Â3,000,000) (Principal Investigator and Lead). Suicidality: Treatment Occurring in Paediatrics - STOP. (11/2010 to 04/2015). 8) European Union FP7-HEALTH-2009-single-stage Grant (2009). ÂHEALTH- 2009-4.2-1: Adapting off-patent medicines to the specific needs of paediatric populations. (Â5,600,000) (Principal Investigator and co-applicant). Paediatric Studies of Risperidone  PERS (05/2010 to 04/2015).
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1) Centre for Personalised Medicine in Rett Syndrome (CPMRS)  Reverse Rett (AMRC Charity) (2019 - 2022): (£998,000) (Principal Clinician) 2) Reverse Rett Grant (2014): (£190,000) (Principal Investigator, Lead). Developing the TRIAL Database (11/2014 - 10/2019).
I am the CEO of HealthTracker Ltd and have shares in the company and the company provides services.
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I am the CEO of HealthTracker Ltd and have shares in the company and the company provides services. Stock/Stock Options, Medical Equipment & Materials: I am the CEO of HealthTracker Ltd and have shares in the company and the company provides services.
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Have provided expert neuropsychiatric opinion via HighStreet Medical Dental Ltd.
- Tim Lotze, MD (tlotze{at}bcm.edu),
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(1) National Multiple Sclerosis Society (2) Muscular Dystrophy Association
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- Russell C. Dale, PhD (russell.dale{at}health.nsw.gov.au),
National Blood Authority. Federal, not for profit
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received an honoraria for lecturing from Biogen Idec and Bristol-Myers-Squibb
Editorial advisory board member of MSARD Editorial board member of Neurology: Neuroimmunology and Neuroinflammation Editorial board member of European Journal of Paediatric Neurology
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Biogen Idec honoraria in 2008 and Bristol-Myers-Squibb in 2015
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NHMRC national grant in 2011 national grant for encephalitis study NHMRC practitioner fellowship 2014-8 NHMRC project grant 2015, 2018 NHMRC partnership grant 2018 NHMRC Investigator grant 2021
Multiple Sclerosis Research Australia 2015
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- Kumaran Deiva, PhD (kumaran.deiva{at}aphp.fr),
Novartis, Oktapharm, Alexion, Viela
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Biogen Idec, travel subsidies Merck Serono, travel subsidies Genzyme, travel subsidies Novartis, expertise
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- Barbara Hero, PhD (barbara.hero{at}uk-koeln.de),
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(1) European Union, Horizon 2020: No. 826494, institutional support, 2018-2022
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- Andrea Klein, PhD (andrea.klein{at}ukbb.ch),
1 Advisory board Roche SMA (commercial) 2 Advisory board Biogen SMA (commercial) 3 Advisory board participation Novartis SMA (commercial) Advisory board particippation Pfizer Duchenne (commercial)
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funding for travel by the Gesellschaft für Neuropädiatrie GNP (non profit organisation)as member of the board
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The swiss registry for nueromuscular disorders recieves funding for research in Duchenne and SMA from Pfizer, PTC, Roche, Biogen, Novartis
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fsrmm (fondation suisse de la recherche contre les maladies musculaires)
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- Pedro de Alarcon, PhD (pdealarc{at}uic.edu),
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State University of New York Upstate
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Neonatal Hematology, Pathogenesis, Diagnosis and Mnagement of Hematologic Problems, Second ed. Cambridge University Press 2013. Neonatal Hematology, Pathogenesis, Diagnosis and Management of Hematologic Problems, Third ed. Cambridge University Press 2021
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ChairÂs Grant U10 CA-98543 and CA-180886 and the Statistical and Data Center Grant U10 CA-98413 and CA-180899 of the ChildrenÂs Oncology Group from the National Cancer Institute, National Institutes of Health, Bethesda, MD U.S.A. Protocol PI for ANBL00P3, 2003-2013
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- Mark P. Gorman, PhD (mark.gorman{at}childrens.harvard.edu),
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(1) Pfizer, (2) Roche
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National Multiple Sclerosis Society (Grant numbers SI-1808- 32326, 16-A0-00-006699-01, RG-1701-26635)
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- Wendy G. Mitchell, PhD (wmitchell{at}chla.usc.edu) and
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Journal of Child Neurology, Editorial Board Member, 2004 to present
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- Ming Lim, MD, PhD
1.SPARKS Charity (non-profit)
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1)Travel grants from Merc Serono for attending meetings (non-profit)
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Consultancy for advisory board meeting CSL Behring. Novartis and Octapharma
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1. National Institute of Health Research (NIHR). A multicentre randomiSed controlled TRial of IntraVEnous immunoglobulin (IVIg) versus standard therapy for the treatment of transverse myelitis in adults and children. HTA 11/129/148 2014-2018 (Chief Investigator) 2. National Institute of Health Research (NIHR). Intravenous immunoglobulin in the management of encephalitis in children (IGNITE). EME 12/212/15, 2015- 2020 (Co-applicant)
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- From the Children's Neurosciences (T.R., M.L.), Evelina London Children's Hospital at Guy's and St Thomas' NHS Foundation Trust, King's Health Partners Academic Health Science Centre; Department Women and Children's Health (T.R., M.L.), School of Life Course Sciences (SoLCS), King's College London, UK; Division of Neurology (E.A.Y.), Department of Pediatrics, Neurosciences and Mental Health (RI), The Hospital for Sick Children; Faculty of Medicine (E.A.Y.), The University of Toronto, Ontario, Canada; Department of Pediatrics (Y.K.) and Department of Neurology (Y.K.), Memorial Sloan Kettering Cancer Center, New York, NY; Department of Pediatrics (Y.K.), Weill Medical College of Cornell University, New York; Children and Young People's Unit (Paola Angelini), The Royal Marsden, Downs Road, Sutton, Surrey; UCL Great Ormond Street Institute of Child Health (C.H.), Department of Neurology, Great Ormond Street Hospital for Children, London; Oxford Autoimmune Neurology Group (S.R.I.), Nuffield Department of Clinical Neurosciences, University of Oxford; Department of Neurology (S.R.I.), Oxford University Hospitals NHS Foundation Trust, UK; SiRIC RTOP (G.S.), Translational Research Department, PSL Research University, Institut Curie Research Center; INSERM U830 (G.S.), PSL Research University, Institut Curie Research Center; SIREDO Center: Care (G.S.), Innovation and Research for Children, Adolescents and Young Adults with Cancer, Institut Curie, Paris, France; Department of Child and Adolescent Psychiatry (P.S.), King's College London; Centre for Interventional Paediatric Psychopharmacology and Rare Diseases (CIPPRD) Research Team (P.S.), South London and Maudsley NHS Foundation Trust, London, UK; Baylor College of Medicine (T.L.), Texas Children's Hospital, Houston; Kids Neuroscience Centre (R.C.D.), The Children's Hospital at Westmead, Westmead, NSW, Australia; TY Nelson Department of Neurology and Neurosurgery (R.C.D.), The Children's Hospital at Westmead; The Children's Hospital at Westmead Clinical School (R.C.D.), Faculty of Medicine, University of Sydney, NSW, Australia; Pediatric Neurology Department (K.D.), Assistance Publique-Hôpitaux de Paris, Hôpitaux Universitaires Paris Saclay, Bicêtre Hospital; National Referral Center for Rare Inflammatory and Auto-Immune Brain and Spinal Diseases (K.D.); Inserm UMR 1184 (K.D.), Immunology of Viral Infections and Autoimmune Diseases, CEA, IDMIT, Le Kremlin Bicêtre, France; Department of Pediatric Hematology and Oncology (B.H.), University Children's Hospital, Koln; Division of Child Neurology (A.K.), University Children's Hospital Bern Inselspital, University of Bern; Department of Pediatric Neurology (A.K.), University Children's Hospital Basel, Switzerland; Department of Pediatrics (Pedro de Alarcon), University of Illinois College of Medicine at Peoria, Peoria IL; Department of Neurology (M.P.G.), Boston Children's Hospital, Harvard Medical School, MA; Division of Neurology (W.G.M.), Department of Pediatrics, Children's Hospital Los Angeles; and Department of Neurology (W.G.M.), Keck School of Medicine at the University of Southern California, Los Angeles.
- Correspondence
Dr. Lim ming.lim{at}gstt.nhs.uk
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