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January 07, 2020; 94 (1) Article

Risks and benefits of unapproved disease-modifying treatments for neurodegenerative disease

Aden C. Feustel, Amanda MacPherson, Dean A. Fergusson, Karl Kieburtz, Jonathan Kimmelman
First published December 2, 2019, DOI: https://doi.org/10.1212/WNL.0000000000008699
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Article Information

vol. 94 no. 1 e1-e14
DOI: 
https://doi.org/10.1212/WNL.0000000000008699
PubMed: 
31792092
Published By: 
Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology
Print ISSN: 
0028-3878
Online ISSN: 
1526-632X
History: 
  • Received May 15, 2019
  • Accepted in final form July 22, 2019
  • First Published December 2, 2019.

Article Versions

Copyright & Usage: 
© 2019 American Academy of Neurology

Author Disclosures

    1. Aden C. Feustel, BSc*,
    2. Amanda MacPherson, BSc*,
    3. Dean A. Fergusson, PhD,
    4. Karl Kieburtz, MD and
    5. Jonathan Kimmelman, PhD
  1. Aden C. Feustel, BSc*,
    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

  2. Amanda MacPherson, BSc*,
    3. 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) CIHR EOG-131588, research assistant, 2018 (2) NCE-BioCanRx CSEI grant, research assistant, 2018-19 (3) CIHR PJT-148726, research assistant, 2019

    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. Dean A. Fergusson, 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. 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

  4. Karl Kieburtz, MD and
    5. Scientific Advisory Boards:

    1. Consultant: The United States National Institutes of Health (NIH, NINDS) Michael J Fox Foundation Blackfynn Neuropore Novartis Roche/Genentech Synagile

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. [patent pending on software system to track adverse events associated with prescribed medications

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. Consultant: Acceleron, Acorda, Alkahest, Amicus, Annexon, Aptinyx, Avion, Axovant, BioMarin, Biotie, Blackthorn, Centrexion, Clintrex, Concert, Cynapsus, Denali, Dr Reddy, Genzyme, Inhibikase, Intec, Ipsen, Jazz, Knopp, Kyowa Kirin, Lundbeck, Medgenesis, Monosol, Neurocrine, Neuroderm, Neuropore, Novartis, Otsuka, Pfizer, Pharma2B, Photopharmics, Prana Biotechnology, Prothena, PTC, Roche/Genentech, Sage Bionetworks, Sarepta, Serina, Sunovion, Synagile, Syneos, Takeda, Teva, UCB Pharma, Ultragenyx, Uniqure, US WorldMeds, Vaccinex, vTv Therapeutics, Voyager, Weston Brain Institute, Zambon

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. Acceleron, Acorda, Alkahest, Amicus, Annexon, Aptinyx, Avion, Axovant, BioMarin, Biotie, Blackthorn, Centrexion, Clintrex, Concert, Cynapsus, Denali, Dr Reddy, Genzyme, Inhibikase, Intec, Ipsen, Jazz, Knopp, Kyowa Kirin, Lundbeck, Medgenesis, Monosol, Neurocrine, Neuroderm, Neuropore, Novartis, Otsuka, Pfizer, Pharma2B, Photopharmics, Prana Biotechnology, Prothena, PTC, Roche/Genentech, Sage Bionetworks, Sarepta, Serina, Sunovion, Synagile, Syneos, Takeda, Teva, UCB Pharma, Ultragenyx, Uniqure, US WorldMeds, Vaccinex, vTv Therapeutics, Voyager, Weston Brain Institute, Zambon and has stock ownership in Clintrex.

    Research Support, Government Entities:

    1. National Institutes of Health NINDS and NCATS

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. MJ Fox 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

  5. Jonathan Kimmelman, PhD
    6. Scientific Advisory Boards:

    1. Ultragenyx (non profit) DSMB (20016- present)

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. Cambridge University Press, for book

    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. Canadian Institutes of Health Research (CIHR) Genome Canada (technically, a private/public partnership) Genome Quebec (technically, a private/public partnership) The work in this ms was funded by CIHR only, grant term 2017- 2020; I am principal investigator. Number is indicated on title page of ms

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. I have received research

    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 the Biomedical Ethics Unit (A.C.F., A.M., J.K.), McGill University, Montreal, Quebec; Ottawa Hospital Research Institute (D.A.F.), ON, Canada; and Department of Neurology (K.K.), University of Rochester, NY.
  1. Correspondence
    Dr. Kimmelman jonathan.kimmelman{at}mcgill.ca
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