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January 19, 2016; 86 (3) ArticleOpen Access

Clinical features of neuromyelitis optica in children

US Network of Pediatric MS Centers report

Tanuja Chitnis, Jayne Ness, Lauren Krupp, Emmanuelle Waubant, Tyler Hunt, Cody S. Olsen, Moses Rodriguez, Tim Lotze, Mark Gorman, Leslie Benson, Anita Belman, Bianca Weinstock-Guttman, Greg Aaen, Jennifer Graves, Marc Patterson, John W. Rose, T. Charles Casper
First published December 18, 2015, DOI: https://doi.org/10.1212/WNL.0000000000002283
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Article Information

vol. 86 no. 3 245-252
DOI: 
https://doi.org/10.1212/WNL.0000000000002283
PubMed: 
26683648
Published By: 
Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology
Print ISSN: 
0028-3878
Online ISSN: 
1526-632X
History: 
  • Received March 13, 2015
  • Accepted in final form September 21, 2015
  • First Published December 18, 2015.

Article Versions

Copyright & Usage: 
© 2015 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.

Author Disclosures

    1. Tanuja Chitnis, MD,
    2. Jayne Ness, MD, PhD,
    3. Lauren Krupp, MD,
    4. Emmanuelle Waubant, MD, PhD,
    5. Tyler Hunt, MStat,
    6. Cody S. Olsen, MS,
    7. Moses Rodriguez, MD,
    8. Tim Lotze, MD,
    9. Mark Gorman, MD,
    10. Leslie Benson, MD,
    11. Anita Belman, MD,
    12. Bianca Weinstock-Guttman, MD,
    13. Greg Aaen, MD,
    14. Jennifer Graves, MD, PhD,
    15. Marc Patterson, MD,
    16. John W. Rose, MD and
    17. T. Charles Casper, PhD
  1. Tanuja Chitnis, MD,
    2. Scientific Advisory Boards:

    1. Dr. Chitnis has served on clinical trial advisory boards for Novartis Pharmaceuticals, and Genzyme-Sanofi.

    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. Dr. Chitnis has served as a consultant for Biogen-Idec, Novartis, Merck- Sereno and Alexion.

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. Dr. Chitnis receives research support from (1) EMD-Serono and (2) Novartis in the form of Independent Investigator Awards.

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. Dr. Chitnis receives research support from the National Multiple Sclerosis Society, the Peabody Foundation, the Consortium for MS Centers and the Guthy-Jackson Charitable Foundation.

    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

  2. Jayne Ness, MD, PhD,
    3. Scientific Advisory Boards:

    1. NONE

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. (1) Journal Pharmacology and Experimental Therapeutics, 2010- present, editorial board (Timothy J Ness, husband)

    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. (1) Commercial entity: Novartis (site PI, Jayne Ness) (2) Commercial entity: Chugai Pharmaceutical (site PI, Jayne Ness) (2) Commercial entity: Medtronic (site PI: Timothy J. Ness, MD-PhD; husband)

    Research Support, Government Entities:

    1. (1) NIH-NINDS, R01NS071463 (PI: Waubant), role: site PI; 2011-2015

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. (1) National Multiple Sclerosis Society (2) Guthy-Jackson Foundation

    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. Lauren Krupp, MD,
    4. Scientific Advisory Boards:

    1. (1)EMD Serono (2)Novartis (3)Biogen Idec

    Gifts:

    1. NONE

    Funding for travel or speaker honoraria:

    1. (1)Biogen Idec, travel and honoraria (2)Novartis Pharmaceuticals, travel and honoraria (3)HealthStar Communications, travel and honoraria (4)Foundation for Improving Patient Outcomes, honoraria (5)Pfizer, honoraria (6)Projects in Knowledge, honoraria and travel (7)Teva Neurosciences, honoraria and travel

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. (1)Multicell Technologies (2)Novartis Pharmaceuticals (3) EMD Serono (4)Biogen Idec (5)Genzyme

    Speakers' Bureaus:

    1. (1)Teva Neurosciences (2) Projects in Knowledge (3) Providence Health and Services

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. (1)Novartis Pharmaceuticals (2)Genentech (3)Biogen Idec (4)Celgene Corporation (5)Teva Neurosciences

    Research Support, Government Entities:

    1. (1)Department of Defense, W91XWH1410248, PI, 2014-2016 (2) NIH/Regents of the University of California, San Francisco, 7621sc, PI, 2013-2016 (3)NINDS/Regents of the University of California, San Francisco, 6873sc, PI, 2011- 2016

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. (1)MS Foundation (2)National MS Society, RG4808A81 (3) Slomo and Cindy Silvian Foundation, 1872 (4)Lourie Foundation

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License fee payments, Technology or Inventions:

    1. (1)Fatigue Severity Scale, payments from Avanir Pharmaceuticals, Abbvie Inc, Osmotica Pharmaceutical Corp, Demos Medical Publishing, UCB, Bristol Myers Squibb, Johnson&Johnson

    Royalty Payments, Technology or Inventions:

    1. (1)Fatigue Severity Scale, payments from Avanir Pharmaceuticals, Abbvie Inc, Osmotica Pharmaceutical Corp, Demos Medical Publishing, UCB, Bristol Myers Squibb, Johnson&Johnson

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  4. Emmanuelle Waubant, MD, PhD,
    5. Scientific Advisory Boards:

    1. Novartis advisory board (pharmaceutical company)

    Gifts:

    1. NONE

    Funding for travel or speaker honoraria:

    1. One educational physician lectures (Genentech, company)

    Editorial Boards:

    1. Annals of Clinical and Translational Neurology since 2013 (editorial advisory board)

    Patents:

    1. NONE

    Publishing Royalties:

    1. Demyelinating disorders of the central nervous system in childhood. Cambridge University. 2011

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. ad hoc consultant for Roche (Company)

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. I am site PI for trials of ocrelizumab in PPMS (Roche, company), dimethylfumaric acid in SPMS (Biogen IDec, company), and fingolimod in pediatric MS (Novartis, company)

    Research Support, Government Entities:

    1. I am supported by the NIH (NS071463, PI Waubant)

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. I am supported by the National MS Society RG4861A3/1 (PI Waubant), the Race to Erase MS

    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. Tyler Hunt, MStat,
    6. 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

  6. Cody S. Olsen, MS,
    7. 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

  7. Moses Rodriguez, MD,
    8. Scientific Advisory Boards:

    1. (1) ZNS1 SRB-M National Institute of Neurological Disorders and Stroke- Loan Repayment Program Member, Review Committee, 03/07- present (2) Fast Forward Scientific and Business Advisory Committee Member, , Fast Forward LLC (a non-profit company wholly owned by the NMSS), 09/07 ?V present (3) Special Emphasis Panel Member, Diversity Predoctoral Fellowship Applications ZRG1 IMM-L 29, 01/08 ?V present

    Gifts:

    1. NONE

    Funding for travel or speaker honoraria:

    1. Received travel expenses and/or honoraria for lectures or educational activities not funded by industry.

    Editorial Boards:

    1. (1) Annals of Neurology, Editorial Advisory Board member, 2007-present, (2) Brain Pathology Advisory Board member, 2000-present, (3) Journal of Neurovirology Advisory Board member, 1994-present, (4)VerusMed Editorial Advisory Board in Neurology, 2007-present

    Patents:

    1. (1)??Monoclonal Antibodies which Promote Central Nervous System Remyelination,?? No. 5,591,629 (January 7, 1997), (2)??Method of Treating Autoimmune and/or Viral Induced Diseases that are Mediated by CD8 Phenotype T Cells?? No. 5,660,828 (August 26, 1997), (3)

    Publishing Royalties:

    1. Rodriguez M. Editor, Advances in Multiple Sclerosis. (Current Topics in Microbiology and Immunology, vol. 318); Heidelberg: Springer-Verlag, 2008. Rodriguez M, Kantarci OH, Pirko I. Multiple Sclerosis. Contemporary Neurology Series. New York: Oxford University Press, 2013.

    Employment, Commercial Entity:

    1. Received travel expenses and/or honoraria for lectures or educational activities not funded by industry

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. (1) Acorda Therapeutics, Inc., research into remyelination antibodies, 2008-present (2) Novartis CFTY720DUSNC18T - 1/1/13-12/31/14

    Research Support, Government Entities:

    1. 1) NIH R01 GM092993 06/01/10-5/31/15 (NCE), 2) NIH/NINDSNS52173-05A1 09/21/10-7/31/15

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. (1) National Multiple Sclerosis Society Collaborative Research Center Grant 4/04-10/14, Principal Investigator. (2)Conrad Hilton Foundation ??A Recombinant Human Monoclonal Antibody for Promoting Myelin Repair in Multiple Sclerosis?? 11/04-5/15. Principal Investigator. (3) Applebaum MS Research 1/2000-12/2014, (4) Applebaum Family Foundation, 1/2000-1/2015 (5) Peterson Foundation (6) McNeilus Family

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. Patents for promotion of remyelination are issued and owned by Mayo Clinic; no royalties received.

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  8. Tim Lotze, MD,
    9. Scientific Advisory Boards:

    1. Sarepta Therapeutics

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. UpToDate. Pediatric Multiple Sclerosis. 2012-2015.

    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. Ptc Therapeutics, Inc

    Research Support, Government Entities:

    1. NIH R01-NS071463-04 REV

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. (1) National Multiple Sclerosis Society, (2) Families Of Spinal Muscular Atrophy, (3)

    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. Department of Justice. Expert witness for defense. 2014- 2015.

  9. Mark Gorman, MD,
    10. 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. (1)National Institutes of Health, 5R01NS071463, Site PI, 2011-2106(2)United States Department of Defense, Fiscal Year 2012 Multiple Sclerosis Research Program Idea Award, Co-investigator, 2012-2014

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. National Multiple Sclerosis Society

    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

  10. Leslie Benson, MD,
    11. 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. Boston Children's Hospital Office of Faculty Development Career Development Award.

    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. Anita Belman, MD,
    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

  12. Bianca Weinstock-Guttman, MD,
    13. Scientific Advisory Boards:

    1. National Multiple Sclerosis Society, Medical Advisory Board, 2006-Present

    Gifts:

    1. NONE

    Funding for travel or speaker honoraria:

    1. Advisory board and speaker engagements for Biogen & Idec; TEVA Neuroscience, EMD Serono, Pfeiser, Novartis and Acorda,, Genzyme&Sanofi, Questcor

    Editorial Boards:

    1. Editorial board for Multiple Sclerosis International BMJ Neurology Journal of Multiple Sclerosis

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. Advisory board for Biogen & Idec; TEVA Neuroscience, EMD Serono, Novartis, Genentech, Questcor, Genzyme&Sanofi

    Speakers' Bureaus:

    1. Advisory board and speaker engagements for Biogen & Idec; TEVA Neuroscience, EMD Serono, Genzyme, Genentech, and Novartis

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. research grants from Biogen Idec, EMD Serono, TEVA, Novartis, Genzyme&Sanofi, Questcor

    Research Support, Government Entities:

    1. NIH multicenter studies NMSS DOD

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. National MS Society, Clinical grant for Pediatric MS Center of Excellence DOD

    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. Greg Aaen, MD,
    14. Scientific Advisory Boards:

    1. NONE

    Gifts:

    1. NONE

    Funding for travel or speaker honoraria:

    1. 1) California Neurology Society 2) Non-profit entity 3) $200 check for travel expenses

    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. 1) NIH-R01NS071463-04 REVISED, Site PI, 2011-2014 2) NMSS-Treatment Adherence in Pediatric Multiple Sclerosis, Site PI, 2014-2015

    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

  14. Jennifer Graves, MD, PhD,
    15. 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. 1) NIH BIRCWH K12 Program (5K12HD052163), investigator, 2013-2015

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. 1) Foundation for the Consortium of Multiple Sclerosis Centers 2) Race to Erase MS Foundation

    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. Marc Patterson, MD,
    16. Scientific Advisory Boards:

    1. (1) Actelion Pharmaceuticals: Chair, Scientific Committee for the Niemann-Pick Registry; 2009-present (honorarium directed to Mayo Clinic); (2) Shire Human Genetic Therapies, Inc.: Member, Globoid Cell Leukodystrophy (GLD) Working Group; 2009-present (honorarium directed to Mayo Clinic); (3) Stem Cells, Inc.: Chair, Data Monitoring Committee, Protocol CL-N001-05; 2006-2014; (4) Amicus Therapeutics: Data Safety Monitoring Board, ad hoc member, Protocol AT1001-012, 2012 -present; (5) Shire HGT, Chair, Data Safety Monitoring Board, Protocol HGT-MLD-070, 2012-present. (6) Agios: consulting. (7) Vtesse - Scientific Advisory Board 2014-2015.

    Gifts:

    1. NONE

    Funding for travel or speaker honoraria:

    1. (1) Actelion Pharmaceuticals: Co-chair and keynote speaker at 1st Scientific Symposium on Niemann-Pick Disease Type C, Frankfurt, Germany, 2014 (honorarium directed to Mayo Clinic); (2) Actelion Pharmaceuticals: Presentation at FDA Endocrinologic and Metabolic Drugs Advisory Committee Meeting (January 12, 2010) in Silver Spring, MD. Travel expenses reimbursed; honorarium directed to Mayo Clinic; (3) Actelion Pharmaceuticals: Speaker at Advisory Board on Niemann-Pick Disease Type C, Munich Germany, 2011 (honorarium directed to Mayo Clinic) (4) Actelion Pharmaceuticals: Speaker at Advisory Board on Niemann-Pick Disease Type C, Athens, Greece, 2012 (honorarium directed to Mayo Clinic)(5) Actelion Pharmaceuticals: Speaker at Advisory Board on Niemann- Pick Disease Type C, Vienna, Austria, 2013 (honorarium directed to Mayo Clinic); Speaker at Forum on Niemann- Pick Disease, type C, Estoril, Portugal, 2015.

    Editorial Boards:

    1. (1) Up-To-Date; Editor, Pediatric Neurology; 2007-present (royalties); (2) Journal of Child Neurology, Editor-in-Chief; 1.1.2014- present (honorarium); (3) Journnal of Inherited Metabolic Disease, Editor 2014- present (travel expenses only)

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. (1)Actelion (2)Agios (3)Genzyme (4)Orphazyme (5)Vtesse

    Speakers' Bureaus:

    1. NONE

    Other activities:

    1. (1) Institute of Medicine - Committee to Review Adverse Effects of Vaccines - 2009 to 2011 (expenses covered, no compensation otherwise); (2) World Health Organization, WHO International Advisory Group for the Revision of ICD-10 Diseases of the Nervous System - 2009 to 2014 (no expenses covered, no compensation otherwise)

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. (1) Actelion Pharmaceuticals: PI, OGT 918-007 (miglustat in Niemann-Pick disease, type C); 2002-2008; (2) Merck Serono: PI (at Mayo Clinic)- Rebif in Pediatric MS; 2010- 2011.

    Research Support, Government Entities:

    1. (1) NIH Co-investigator on Grant Number: U54NS065768 - 01 PI Name: Whitley, Chester B; 2009-2014; also, director of the Educational Core for this grant.

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. (1) National MS Society; National Pediatric MS Centers of Excellence and Registry; 2006-2011.

    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

  16. John W. Rose, MD and
    17. 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. member -- Biogen -- Advisory Committee -- 2009 (unpaid)

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. Biogen, Lineagen, Teva Neuroscience

    Research Support, Government Entities:

    1. VA Merit Review Grant (PI) 2013-2015

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. National Multiple Sclerosis Society, (Co PI) 2007 to 20016; Guthy Jackson Charitable Foundation (Co PI) 2014 to 2016.

    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

  17. T. Charles Casper, PhD
    18. 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. (1) Biovest International, Inc.

    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. (1)NIAAA, #70154751, Site Lead, 2012-2014 (2)NHLBI, #R01HL103427-03, Site Lead, 2010-2014 (3)NINDS, #7025SC, Site Lead, 2011-2015 (4)HRSA, #6U03MC00008-12, Biostatistician, 2012-2016 (5)AHRQ, #5R01HS020270-03, Site Lead, 2013-2016 (6)NCATS, #1UL1TR001067-01, Biostatistician, 2013-2018

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. (1)National Multiple Sclerosis Society, #HC0165, Principal Investigator, 2013-2016

    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

  1. From Partners Multiple Sclerosis Center (T.C.), Department of Neurology, Brigham and Women's Hospital, Brookline; Partners Pediatric Multiple Sclerosis Center (T.C.), Massachusetts General Hospital for Children, Boston; University of Alabama Center for Pediatric Onset Demyelinating Disease (J.N.), Children's Hospital of Alabama, Birmingham; the Lourie Center for Pediatric MS, Stony Brook Children's Hospital (L.K., A.B.), New York, NY; the Department of Neurology (E.W., J.G.) and the Department of Pediatrics, Benioff Children's Hospital (E.W.), University of California, San Francisco; the Departments of Pediatrics (T.H., C.S.O., T.C.C.) and Neurology (J.W.R.), University of Utah, Salt Lake City; Mayo Clinic's Pediatric MS Center (M.R., M.P.), Rochester, MN; Blue Bird Circle Multiple Sclerosis Center (T.L.), Baylor College of Medicine, Houston, TX; Boston Children's Hospital (M.G., L.B.), MA; the Pediatric Multiple Sclerosis Center (B.W.-G.), Jacobs Neurological Institute, SUNY Buffalo, New York, NY; and Pediatric MS Center at Loma Linda University Children's Hospital (G.A.), CA.
  1. Correspondence to Dr. Chitnis: tchitnis{at}rics.bwh.harvard.edu
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