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March 24, 2021Commentary

A Roadmap to Patient Engagement: FSHD 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, on behalf of the FSHD Clinical Trial Research Network
First published March 24, 2021, DOI: https://doi.org/10.1212/CPJ.0000000000001074
Samantha LoRusso
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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Katy Eichinger
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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  • For correspondence: katy_eichinger@urmc.rochester.edu
Kiley Higgs
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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  • For correspondence: ksims2@kumc.edu
Leann Lewis
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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  • For correspondence: leann_lewis@urmc.rochester.edu
Michaela Walker
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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  • For correspondence: mwalker20@kumc.edu
James Albert
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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  • For correspondence: jim@netrition.com
Michele Langer
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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  • For correspondence: michelelisette@aol.com
Rabi Tawil
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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  • For correspondence: rabi_tawil@urmc.rochester.edu
Jeffrey M. Statland
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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  • For correspondence: jstatland@kumc.edu
Kim S. Kimminau
Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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Samantha LoRusso, Department of Neurology, Ohio State University Medical Center, 395 W. 12th Ave, 7th Floor, Columbus, OH 43210, United States; Katy Eichinger, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Kiley Higgs, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Leann Lewis, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Michaela Walker, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; James Albert, no affiliation, patient contributor; Michele Langer, no affiliation, patient contributor; Rabi Tawil, Department of Neurology, Strong Memorial Hospital, University of Rochester, 601 Elmwood Ave., Rochester, NY 14642, United States; Jeffrey M. Statland, Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Blvd. MS 7008, Kansas City, KS 66160, United States; Kim S. Kimminau, University of Missouri School of Medicine, One Hospital Dr.,Columbia, MO 65212, United States
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A Roadmap to Patient Engagement: FSHD 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, on behalf of the FSHD Clinical Trial Research Network
Neurol Clin Pract Mar 2021, 10.1212/CPJ.0000000000001074; 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 neurological disorders. We implemented an engagement plan during Clinical Trial Readiness to Solve Barriers to Drug Development for FSHD (ReSolve), an 18-month, multi-site, 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 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 neurological diseases.

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

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