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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 20, 2019 - Issue 7-8
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Clinical

Exploring patient and public involvement in motor neuron disease research

Lucy S. MussonSheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, United Kingdom; ORCID Iconhttp://orcid.org/0000-0002-1246-2734View further author information
ORCID Icon,
Christopher J. McDermottSheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, United Kingdom; ;Sheffield Motor Neuron Disease Care and Research Centre, Royal Hallamshire Hospital, Sheffield, United KingdomORCID Iconhttp://orcid.org/0000-0002-1269-9053View further author information
ORCID Icon &
Esther V. HobsonSheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, United Kingdom; ;Sheffield Motor Neuron Disease Care and Research Centre, Royal Hallamshire Hospital, Sheffield, United KingdomCorrespondence[email protected]
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Pages 511-520 | Received 31 Jan 2019, Accepted 08 Jul 2019, Published online: 02 Aug 2019

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James D. Berry, Richard Bedlack, Debra Mathews, Wendy Agnese & Stephen Apple. (2021) Engaging ALS patients and caregivers (the ALS research ambassadors) to help design the REFINE-ALS biomarker study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:1-2, pages 147-150.
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Richard Bedlack, Allison Pogemiller, Jeremy Shefner, Merit Cudkowicz & Terri Heiman-Patterson. (2020) ALS clinical research learning institutes (ALS-CRLI): empowering people with ALS to be research ambassadors. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21:3-4, pages 216-221.
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Articles from other publishers (5)

Anna Maria Chudyk, Roger Stoddard, Nicola McCleary, Todd A. Duhamel, Carolyn Shimmin, Serena Hickes, Annette S. H. Schultz, Sandra Dalziel, Delane Linkiewich, Lesley Norris, Kurt Schreiner, Kathy Smith & Janice Sumpton. (2023) Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study. Research Involvement and Engagement 9:1.
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Ruth Cox, Matthew Molineux, Melissa Kendall, Elizabeth Miller & Bernadette Tanner. (2022) Different in so many ways: Exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography. Australian Occupational Therapy Journal 69:6, pages 676-688.
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Jonathan Lauzon-Schnittka, Sophie Audette-Chapdelaine, Denis Boutin, Catherine Wilhelmy, Anne-Marie Auger & Magaly Brodeur. (2022) The experience of patient partners in research: a qualitative systematic review and thematic synthesis. Research Involvement and Engagement 8:1.
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Amy Lawton & Maja Husaric. 2022. Exercise to Prevent and Manage Chronic Disease Across the Lifespan. Exercise to Prevent and Manage Chronic Disease Across the Lifespan 349 361 .
Anne Hogden, Camille Paynter & Karen Hutchinson. (2020) How can we improve patient-centered care of motor neuron disease?. Neurodegenerative Disease Management 10:2, pages 91-97.
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