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October 2021; 11 (5) Commentary

A Roadmap to Patient Engagement

Facioscapulohumeral Muscular Dystrophy and the ReSolve Clinical Trial

Samantha LoRusso, Katy Eichinger, Kiley Higgs, Leann Lewis, Michaela Walker, James Albert, Michele Langer, Rabi Tawil, Jeffrey M. Statland, Kim S. Kimminau
First published March 24, 2021, DOI: https://doi.org/10.1212/CPJ.0000000000001074
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Article Information

vol. 11 no. 5 e722-e726
DOI: 
https://doi.org/10.1212/CPJ.0000000000001074
Published By: 
Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology
Print ISSN: 
2163-0402
Online ISSN: 
2163-0933
History: 
  • Received November 13, 2020
  • Accepted February 8, 2021
  • First Published March 24, 2021.

Article Versions

Copyright & Usage: 
© 2021 American Academy of Neurology

Author Disclosures

    1. Samantha LoRusso, MD,
    2. Katy Eichinger, PT, PhD, DPT, NCS,
    3. Kiley Higgs, BSBA, CRRP,
    4. Leann Lewis, MS,
    5. Michaela Walker, MPH,
    6. James Albert, MS,
    7. Michele Langer, BA, RNC-LRN,
    8. Rabi Tawil, MD,
    9. Jeffrey M. Statland, MD* and
    10. Kim S. Kimminau, PhD*
    11. on behalf of the FSHD Clinical Trial Research Network
  1. Samantha LoRusso, 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. NIH NeuroNext, 5U24NS107205-03, NeuroNext Fellow, 2 years

    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. Katy Eichinger, PT, PhD, DPT, NCS,
    3. Scientific Advisory Boards:

    1. (1) Advisory board for Biogen, Acceleron, PTC Therapeutics

    Gifts:

    1. NONE

    Funding for travel or speaker honoraria:

    1. Funding for travel from the (1) FSH Society and the (2) Myotonic Dystrophy Foundation

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. Consultant fees from (1) Ionis Pharmaceuticals,(2) Biogen, (3)Acceleron Pharmaceuticals (4) Fulcrum Therapeutics (5) Avidity

    Speakers' Bureaus:

    1. NONE

    Other activities:

    1. Ology- webcast panelist

    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. Charcot Marie Tooth Association

    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. Kiley Higgs, BSBA, CRRP,
    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. Leann Lewis, MS,
    5. 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

  5. Michaela Walker, MPH,
    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. James Albert, 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. Michele Langer, BA, RNC-LRN,
    8. 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

  8. Rabi Tawil, MD,
    9. Scientific Advisory Boards:

    1. Fulcrum Therapeutics, Scientific advisory board, Acceleron Pharma, Scientific advisory board Dyne Therapeutics, Scientific advisory board Arrowhead Pharma, Scientific advisory board

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. Journal of Neuromuscular Diseases (Editorial board)

    Patents:

    1. NONE

    Publishing Royalties:

    1. Neuromuscular Disorders, Rabi N Tawil & Shannon Venance (Editors), Neurology in Practice Series, Wiley-Blackwell, 2011

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. MT Pharma, consultant

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. Fulcrum Therapeutics

    Research Support, Government Entities:

    1. 1. NIH: 1U54 AR065139-01A1, co-investigator, PI: Jeff Chamberlain, 05/1/15-05/31/23 3/1/14-3/1/18 4. NIH: 1 U01 NS101944-01, NIH/NINDS, PI: Tawil, Rabi 06/2017-06/2022

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. FSH Society, co-investigator Friends of FSH Research, Investigator

    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. Jeffrey M. Statland, MD* and
    10. Scientific Advisory Boards:

    1. 1) Advisory Board - Fulcrum 2) Advisory Board - Sarepta 3) Advisory Board - Acceleron 4) Advisory Board - Dyne 5) Advisory Board - Avidity

    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) Acceleron 2) Fulcrum 3) Strongbridge 4) Dyne 5) Sarepta 6) Avidity 6) Avidity

    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) NINDS 5U01NS101944-02, Role co-PI, 6/2017-present 2) NCATS R21TR003184-01, Role co-PI, 6/2020-present

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. 1) FSH Society Grant - FSHD clinical trial research network 2) MDA Infrastructure Grant - 06/2018 - present 3) Friends of FSH Research - MOVE FSHD study

    Stock/Stock Options/Board of Directors Compensation:

    1. 1) Dyne - options SAB

    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. Kim S. Kimminau, PhD*
    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. (2) Sunflower Foundation

    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

  1. Department of Neurology (SL), Ohio State University Medical Center, Columbus, Ohio; Department of Neurology (KE. LL, RT), Strong Memorial Hospital, University of Rochester, Rochester, New York; Department of Neurology (KH, MW, JMS), University of Kansas Medical Center, Kansas City, Kansas; University of Missouri School of Medicine (KSK), Columbia, Missouri.
  1. Correspondence
    Dr. LoRusso samantha.lorusso{at}osumc.edu
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