A Roadmap to Patient Engagement
Facioscapulohumeral Muscular Dystrophy and the ReSolve Clinical Trial
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Article Information
- Received November 13, 2020
- Accepted February 8, 2021
- First Published March 24, 2021.
Article Versions
- Previous version (March 24, 2021 - 12:45).
- You are viewing the most recent version of this article.
Author Disclosures
- Samantha LoRusso, MD,
- Katy Eichinger, PT, PhD, DPT, NCS,
- Kiley Higgs, BSBA, CRRP,
- Leann Lewis, MS,
- Michaela Walker, MPH,
- James Albert, MS,
- Michele Langer, BA, RNC-LRN,
- Rabi Tawil, MD,
- Jeffrey M. Statland, MD* and
- Kim S. Kimminau, PhD*
- on behalf of the FSHD Clinical Trial Research Network
- Samantha LoRusso, MD,
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NIH NeuroNext, 5U24NS107205-03, NeuroNext Fellow, 2 years
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- Katy Eichinger, PT, PhD, DPT, NCS,
(1) Advisory board for Biogen, Acceleron, PTC Therapeutics
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Funding for travel from the (1) FSH Society and the (2) Myotonic Dystrophy Foundation
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Consultant fees from (1) Ionis Pharmaceuticals,(2) Biogen, (3)Acceleron Pharmaceuticals (4) Fulcrum Therapeutics (5) Avidity
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Ology- webcast panelist
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Charcot Marie Tooth Association
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- Kiley Higgs, BSBA, CRRP,
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- Leann Lewis, MS,
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- Michaela Walker, MPH,
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- James Albert, MS,
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- Michele Langer, BA, RNC-LRN,
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- Rabi Tawil, MD,
Fulcrum Therapeutics, Scientific advisory board, Acceleron Pharma, Scientific advisory board Dyne Therapeutics, Scientific advisory board Arrowhead Pharma, Scientific advisory board
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Journal of Neuromuscular Diseases (Editorial board)
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Neuromuscular Disorders, Rabi N Tawil & Shannon Venance (Editors), Neurology in Practice Series, Wiley-Blackwell, 2011
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MT Pharma, consultant
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Fulcrum Therapeutics
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
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FSH Society, co-investigator Friends of FSH Research, Investigator
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- Jeffrey M. Statland, MD* and
1) Advisory Board - Fulcrum 2) Advisory Board - Sarepta 3) Advisory Board - Acceleron 4) Advisory Board - Dyne 5) Advisory Board - Avidity
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1) Acceleron 2) Fulcrum 3) Strongbridge 4) Dyne 5) Sarepta 6) Avidity 6) Avidity
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1) NINDS 5U01NS101944-02, Role co-PI, 6/2017-present 2) NCATS R21TR003184-01, Role co-PI, 6/2020-present
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1) FSH Society Grant - FSHD clinical trial research network 2) MDA Infrastructure Grant - 06/2018 - present 3) Friends of FSH Research - MOVE FSHD study
1) Dyne - options SAB
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- Kim S. Kimminau, PhD*
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(2) Sunflower Foundation
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- 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.
- Correspondence
Dr. LoRusso samantha.lorusso{at}osumc.edu
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