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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 22, 2021 - Issue 1-2
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Short Reports

Engaging ALS patients and caregivers (the ALS research ambassadors) to help design the REFINE-ALS biomarker study

James D. Berry1 Sean M. Healey and AMG Center for ALS, Massachusetts General Hospital, Boston, MA, USAView further author information
,
Richard Bedlack2 Duke University School of Medicine, Durham, NC, USAView further author information
,
Debra Mathews3 Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, USAView further author information
,
Wendy Agnese4 Formerly Mitsubishi Tanabe Pharma America, Inc., Jersey City, NJ, USA, andView further author information
&
Stephen Apple5 Mitsubishi Tanabe Pharma America, Inc., Jersey City, NJ, USACorrespondence[email protected]
View further author information
Pages 147-150 | Received 27 Apr 2020, Accepted 29 Jul 2020, Published online: 24 Aug 2020

References

  • Berry J, Brooks BR, Genge A, Heiman-Patterson T, Apple S, Benatar M, Bowser R, et al. Radicava/edaravone findings in biomarkers from ALS (REFINE ALS): interim analysis. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20:286–7.
  • Smith SK, Selig W, Harker M, Roberts JN, Hesterlee S, Leventhal D, et al. Patient engagement practices in clinical research among patient groups, industry, and academia in the United States: a survey. PLOS One. 2015;10:e0140232.
  • van den Berg LH, Sorenson E, Gronseth G, Macklin EA, Andrews J, Baloh RH, et al. Revised Airlie House consensus guidelines for design and implementation of ALS clinical trials. Neurology. 2019;92:e1610–e1623.
  • McDermott CJ, Bradburn MJ, Maguire C, Cooper CL, Baird WO, Baxter SK, et al. DiPALS: Diaphragm Pacing in patients with Amyotrophic Lateral Sclerosis – a randomised controlled trial. Health Technol Assess. 2016;20:1–186.
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  • Gregg A, Getz N, Benger J, Anderson A. A novel collaborative approach to building better clinical trials: new insights from a patient engagement workshop to propel patient-centricity forward. Ther Innov Regul Sci. 2019; 2168479019849875.
  • Bedlack R, Pogemiller A, Shefner J, Cudkowicz M, Heiman-Patterson T. ALS clinical research learning institutes (ALS-CRLI): empowering people with ALS to be research ambassadors. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21:216–21.
  • Musson LS, McDermott CJ, Hobson EV. Exploring patient and public involvement in motor neuron disease research. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20:511–20.
  • Sohn E. Fundraising: The Ice Bucket Challenge delivers. Nature. 2017;550:S113–S14.
  • Department of Defense – Congresionally Directed Medical Research Programs. FY20 Amyotrophic Lateral Sclerosis Research Program (ALSRP). Available at: https://cdmrp.army.mil/alsrp/default. Accessed June 11, 2020.
  • Bedlack RS, Wicks P, Vaughan T, Opie A, Blum R, Dios A, et al. Lunasin does not slow ALS progression: results of an open-label, single-center, hybrid-virtual 12-month trial. Amyotroph Lateral Scler Frontotemporal Degener. 2019; 20:285–93.

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