Patient engagement in research: lessons learned from CAPTURE ALS, a longitudinal observational ALS study.

Autor: Genuis SK; Division of Neurology, Department of Medicine, University of Alberta, Edmonton, AB, Canada., Luth W; Division of Neurology, Department of Medicine, University of Alberta, Edmonton, AB, Canada., Magnussen C; Montreal Neurological Institute-Hospital, McGill University, Montreal, QC, Canada., Vande Velde C; Department of Neurosciences, Université de Montréal, Montreal, QC, Canada., Taylor D; ALS Society of Canada, Toronto, ON, Canada, and., Johnston WS; Division of Neurology, Department of Medicine, University of Alberta, Edmonton, AB, Canada.

Publikováno v: Amyotrophic lateral sclerosis & frontotemporal degeneration [Amyotroph Lateral Scler Frontotemporal Degener] 2024 Aug; Vol. 25 (5-6), pp. 634-643. Date of Electronic Publication: 2024 Mar 22.

Assessing the Measurement Properties of the Self-Administered Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R): A Rasch Analysis.

Autor: Mehdipour A; School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada., Teshler L; School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada., Dal Bello-Haas V; School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada., Richardson J; School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada., Beauchamp M; School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada., Turnbull J; Department of Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada., Chum M; Department of Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada., Johnston W; Department of Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada., O'Connell C; Stan Cassidy Centre for Rehabilitation, Dalhousie Medicine New Brunswick, Fredericton, New Brunswick, Canada., Luth W; Department of Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada., Kuspinar A; School of Rehabilitation Science, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.

Publikováno v: Physical therapy [Phys Ther] 2023 Nov 04; Vol. 103 (11).

Amyotrophic lateral sclerosis (ALS) health charities are central to ALS care: perspectives of Canadians affected by ALS.

Autor: Ahmad M; Department of History, University of Ottawa, Ottawa, Canada., Genuis SK; Division of Neurology, Department of Medicine, University of Alberta, Edmonton, Canada, and., Luth W; Division of Neurology, Department of Medicine, University of Alberta, Edmonton, Canada, and., Bubela T; Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada., Johnston WS; Division of Neurology, Department of Medicine, University of Alberta, Edmonton, Canada, and.

Publikováno v: Amyotrophic lateral sclerosis & frontotemporal degeneration [Amyotroph Lateral Scler Frontotemporal Degener] 2023 May; Vol. 24 (3-4), pp. 246-255. Date of Electronic Publication: 2022 Sep 16.

Refining items for a preference-based, amyotrophic lateral sclerosis specific, health-related quality of life scale.

Autor: Van Damme J; School of Rehabilitation Science, McMaster University, Hamilton, Canada., Kuspinar A; School of Rehabilitation Science, McMaster University, Hamilton, Canada., Johnston W; Department of Medicine, University of Alberta, Edmonton, Canada., O'Connell C; Dalhousie Medicine New Brunswick, Stan Cassidy Centre for Rehabilitation, Fredericton, Canada., Turnbull J; Department of Medicine, McMaster University, Hamilton, Canada., Chum M; Department of Medicine, McMaster University, Hamilton, Canada., Strachan P; School of Nursing, McMaster University, Hamilton, Canada., Luth W; Department of Medicine, University of Alberta, Edmonton, Canada., McCullum S; Dalhousie Medicine New Brunswick, Stan Cassidy Centre for Rehabilitation, Fredericton, Canada., Peters N; School of Rehabilitation Science, McMaster University, Hamilton, Canada.; School of Physical Therapy, Western University, London, Canada., MacDermid J; School of Rehabilitation Science, McMaster University, Hamilton, Canada.; School of Physical Therapy, Western University, London, Canada., Dal Bello-Haas V; School of Rehabilitation Science, McMaster University, Hamilton, Canada.

Publikováno v: Amyotrophic lateral sclerosis & frontotemporal degeneration [Amyotroph Lateral Scler Frontotemporal Degener] 2022 Nov; Vol. 23 (7-8), pp. 508-516. Date of Electronic Publication: 2022 Feb 11.

Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence.

Autor: Genuis SK; Division of Neurology, Department of Medicine, University of Alberta, Edmonton, AB, Canada., Luth W; School of Public Health, University of Alberta, Edmonton, AB, Canada., Campbell S; John W. Scott Health Sciences Library, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada., Bubela T; Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada., Johnston WS; Division of Neurology, Department of Medicine, University of Alberta, Edmonton, AB, Canada.

Publikováno v: Frontiers in neurology [Front Neurol] 2021 Aug 04; Vol. 12, pp. 683197. Date of Electronic Publication: 2021 Aug 04 (Print Publication: 2021).