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Valentina Buscemi, Annette Boaz, Helen Dawes, Thomas Jaki, Fiona Jones, Jonathan Marsden, Lorna Paul, Rebecca Playle, Elizabeth Randell, Michael Robling, Lynn Rochester, Monica Busse & Gita Ramdharry. (2023) Exploring the issues that influence how people with rare neurological conditions engage in physical activity. Disability and Rehabilitation 0:0, pages 1-10.
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Victoria Edwards, Chiara Vari, Michael Rose, Christopher D. Graham, Nicola O'Connell, Emma Taylor, Lance M. McCracken, Aleksandar Radunovic, Wojtek Rakowicz, Sam Norton & Trudie Chalder. (2023) Participant experiences of guided self-help Acceptance and Commitment Therapy for improving quality of life in muscle disease: a nested qualitative study within the ACTMus randomized controlled trial. Frontiers in Psychology 14.
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Ronne Pater, Joana Garmendia, Benjamin Gallais, Christopher Graham, Nicoline Voet, Nathalie Angeard, Hilde Braakman, Marnix van Bruggen, Cassiano Cesar de Carvalho Piccolo, Tatiana de Carvalho Piccolo (sister of Cassiano)Florence Chanteux, Grazia D'Angelo, Baziel van Engelen, Benjamin Gallais, Joana Garmendia Zaldua, Christopher Graham, Ingrid de Groot, Jos Hendriksen, Sylvia Klinkenberg, Madelon Kroneman, Garazi Labayru, Samar Muslemani, Maria Nobile, Luca Padua, Ronne Pater, Rosaline Quinlivan, Michael Rose, Carsten Schröter, Andone Sistiaga, Nicoline Voet, Stefan Winblad & Peter Young. (2023) 267th ENMC International workshop: psychological interventions for improving quality of life in slowly progressive neuromuscular disorders. Neuromuscular Disorders 33:7, pages 562-569.
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Barbara Groot, Annyk Haveman, Mireille Buree, Ruud van Zuijlen, Juliette van Zuijlen & Tineke Abma. (2022) What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again. International Journal of Environmental Research and Public Health 19:4, pages 1927.
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Yvonne Veenhuizen, Ton Satink, Maud JL Graff, Alexander CH Geurts, Jan T Groothuis, Baziel GM van Engelen, Maria WG Nijhuis-van der Sanden & Edith HC Cup. (2021) Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue. BMJ Open 11:8, pages e048890.
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Eric L Voorn, Fieke S Koopman, Frans Nollet & Merel-Anne Brehm. (2021) Individualized Aerobic Exercise in Neuromuscular Diseases: A Pilot Study on the Feasibility and Preliminary Effectiveness to Improve Physical Fitness. Physical Therapy 101:3.
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Ashley Hawarden, Clare Jinks, Waheed Mahmood, Laurna Bullock, Steven Blackburn, Stephen Gwilym & Zoe Paskins. (2020) Public priorities for osteoporosis and fracture research: results from a focus group study. Archives of Osteoporosis 15:1.
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V. Yu. Kudryashova, N. B. Lutova, D. I. Rudenko, A. Ya. Vuks, T. R. Stuchevskaya, O. D. Egorova, N. K. Kulagina & S. M. Zatokovenko. (2020) Features of Adaptive and Compensatory Psychological Mechanisms in Patients with Myasthenia Gravis. Russian neurological journal 25:4, pages 14-21.
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Catherine Moses, Kaitlyn Flegg & Helen Dimaras. (2020) Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study. Health Expectations 23:3, pages 632-643.
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Anne-Floor M Schölvinck, Carina A C M Pittens & Jacqueline E W Broerse. (2020) Patient involvement in agenda-setting processes in health research policy: A boundary work perspective. Science and Public Policy 47:2, pages 246-255.
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Vivienne Travlos, Jenny Downs, Andrew Wilson, Dana Hince & Shane Patman. (2019) Mental wellbeing in non-ambulant youth with neuromuscular disorders: What makes the difference?. Neuromuscular Disorders 29:1, pages 48-58.
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Eva F. Maassen, Barbara J. Regeer, Joske F.G. Bunders, Eline J. Regeer & Ralph W. Kupka. (2018) A research agenda for bipolar disorder developed from a patients’ perspective. Journal of Affective Disorders 239, pages 11-17.
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Andrea Young, Devidas Menon, Jackie Street, Walla Al-Hertani & Tania Stafinski. (2017) Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review. Orphanet Journal of Rare Diseases 12:1.
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Anne-Floor M. Schölvinck, Carina A. C. M. Pittens & Jacqueline E. W. Broerse. (2017) The Research Priorities of People with Visual Impairments in the Netherlands. Journal of Visual Impairment & Blindness 111:3, pages 201-217.
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Karen M Davison, Carla D’Andreamatteo, Scott Mitchell & Pat Vanderkooy. (2017) The development of a national nutrition and mental health research agenda with comparison of priorities among diverse stakeholders. Public Health Nutrition 20:4, pages 712-725.
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Marie Kierkegaard, Emilie Petitclerc, Luc J. Hébert & Cynthia Gagnon. (2017) Is one trial enough for repeated testing? Same-day assessments of walking, mobility and fine hand use in people with myotonic dystrophy type 1. Neuromuscular Disorders 27:2, pages 153-158.
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S.E. Hartley & R.C. Stockley. (2016) Collaborative goal setting with adults attending physiotherapy at a specialist neuromuscular centre: is it always appropriate? A cross-sectional survey. Physiotherapy 102:4, pages 320-326.
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Vivienne Travlos, Caroline Bulsara, Shane Patman & Jenny Downs. (2016) A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders. NeuroRehabilitation 39:4, pages 519-534.
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Elaine Walklet, Kate Muse, Jane Meyrick & Tim Moss. (2016) Do Psychosocial Interventions Improve Quality of Life and Wellbeing in Adults with Neuromuscular Disorders? A Systematic Review and Narrative Synthesis. Journal of Neuromuscular Diseases 3:3, pages 347-362.
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Karin Piil & Mary Jarden. (2016) Patient involvement in research priorities (PIRE): a study protocol: Table 1. BMJ Open 6:5, pages e010615.
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Yvonne Veenhuizen, Edith HC Cup, Jan T Groothuis, Jan CM Hendriks, Eddy MM Adang, Baziel GM van Engelen & Alexander CH Geurts. (2015) Effectiveness and cost-effectiveness of a self-management group program to improve social participation in patients with neuromuscular disease and chronic fatigue: protocol of the Energetic study. BMC Neurology 15:1.
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Tineke A. Abma, Carina A.C.M. Pittens, Merel Visse, Janneke E. Elberse & Jacqueline E.W. Broerse. (2015) Patient involvement in research programming and implementation. Health Expectations 18:6, pages 2449-2464.
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Christopher D. Graham, Zachary Simmons, Simon R. Stuart & Michael R. Rose. (2015) The potential of psychological interventions to improve quality of life and mood in muscle disorders. Muscle & Nerve 52:1, pages 131-136.
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Devidas Menon, Tania Stafinski, Andrea Dunn & Hilary Short. (2014) Involving Patients in Reducing Decision Uncertainties Around Orphan and Ultra-Orphan Drugs: A Rare Opportunity?. The Patient - Patient-Centered Outcomes Research 8:1, pages 29-39.
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Nicoline VoetGijs BleijenbergJan HendriksImelda de GrootGeorge PadbergBaziel van EngelenAlexander Geurts. (2014) Both aerobic exercise and cognitive-behavioral therapy reduce chronic fatigue in FSHD. Neurology 83:21, pages 1914-1922.
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K. Schipper, L. Dauwerse, A. Hendrikx, J.W. Leedekerken & T.A. Abma. (2014) Living with Parkinson's disease: Priorities for research suggested by patients. Parkinsonism & Related Disorders 20:8, pages 862-866.
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Laura P. Forsythe, Victoria Szydlowski, Mohammad Hassan Murad, Stanley Ip, Zhen Wang, Tarig A. Elraiyah, Rachael Fleurence & David H. Hickam. (2014) A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases. Journal of General Internal Medicine 29:S3, pages 788-800.
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Eric L. Voorn, Karin H. Gerrits, Fieke S. Koopman, Frans Nollet & Anita Beelen. (2014) Determining the Anaerobic Threshold in Postpolio Syndrome: Comparison With Current Guidelines for Training Intensity Prescription. Archives of Physical Medicine and Rehabilitation 95:5, pages 935-940.
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Maarten P.T. de Wit, Tineke A. Abma, Marije S. Koelewijn-van Loon, Sarah Collins & John Kirwan. (2014) What Has Been the Effect on Trial Outcome Assessments of a Decade of Patient Participation in OMERACT?. The Journal of Rheumatology 41:1, pages 177-184.
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