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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
Samantha LoRusso
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.
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Katy Eichinger
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.
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Kiley Higgs
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.
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Leann Lewis
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.
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Michaela Walker
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.
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James Albert
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.
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Michele Langer
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.
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Rabi Tawil
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.
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Jeffrey M. Statland
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.
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Kim S. Kimminau
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.
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Full PDF
Citation
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
Neurol Clin Pract Oct 2021, 11 (5) e722-e726; DOI: 10.1212/CPJ.0000000000001074

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Abstract

We describe our efforts to overcome barriers to patient engagement in facioscapulohumeral muscular dystrophy (FSHD) and offer a roadmap that can be replicated in other rare neurologic disorders. We implemented an engagement plan during Clinical Trial Readiness to Solve Barriers to Drug Development for FSHD (ReSolve), an 18-month, multisite, observational study of individuals with FSHD. Elements of our engagement plan included conducting focus groups during protocol development, patient involvement on the ReSolve external advisory committee, creation of a patient advisory committee, and collaboration with patient advocacy groups. Patient feedback led to adaptations in the study protocol and to changes in recruitment and retention methods. Patient engagement ensures that the patient voice contributes to multiple aspects of trial design and implementation. Our engagement efforts exemplify how collaboration with patients and families can be accomplished in FSHD and the resultant roadmap process may be replicable in other rare neurologic diseases.

Footnotes

  • Funding information and disclosures are provided at the end of the article. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.

  • ↵* These authors are co-senior authors and contributed equally to this work.

  • FSHD Clinical Trial Research Network coinvestigators are listed in the appendix 2 at the end of the article.

  • Received November 13, 2020.
  • Accepted February 8, 2021.
  • © 2021 American Academy of Neurology
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