266th ENMC International Workshop: Remote delivery of clinical care and validation of remote clinical outcome assessments in neuromuscular disorders: A response to COVID-19 and proactive planning for the future. Hoofddorp, The Netherlands, 1-3 April 2022

Lindsay N Alfano; Meredith K James; Gita M Ramdharry; Linda P Lowes; 266th ENMC Workshop Study Group

doi:10.1016/j.nmd.2023.02.011

266th ENMC International Workshop: Remote delivery of clinical care and validation of remote clinical outcome assessments in neuromuscular disorders: A response to COVID-19 and proactive planning for the future. Hoofddorp, The Netherlands, 1-3 April 2022

Neuromuscul Disord. 2023 Apr;33(4):339-348. doi: 10.1016/j.nmd.2023.02.011. Epub 2023 Mar 4.

Authors

Lindsay N Alfano¹, Meredith K James², Gita M Ramdharry³, Linda P Lowes⁴; 266th ENMC Workshop Study Group

Collaborators

266th ENMC Workshop Study Group:
Julie Coats⁵, José Corderí⁶, Annette Costello⁷, Michelle Eagle⁸, Maha Elseed⁹, Alessandra Gaeta¹⁰, Heather Gordish-Dressman¹¹, Elin Haf Davies¹², Anri Human¹³, Lone Knudsen¹⁴, Mindy Leffler¹⁵, Jennifer Levy¹⁶, Charlotte Lilien¹⁷, Maria Mancini¹⁸, Anna Mayhew¹⁹, Katlyn McGrattan²⁰, Robert Muni-Lofra², Allison Peck²¹, Nathan Peck²¹, Valeria Prada²², Hara Pylarinou²³, Kristy Rose²⁴, Ulla Werlauff¹⁴

Affiliations

¹ The Abigail Wexner Research Institute at Nationwide Children's Hospital, Center for Gene Therapy, Columbus, OH, United States; The Ohio State University College of Medicine, Department of Pediatrics, Columbus, OH, United States. Electronic address: lindsay.alfano@nationwidechildrens.org.
² The John Walton Muscular Dystrophy Research Centre, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle Upon Tyne, United Kingdom.
³ Queen Square Centre for Neuromuscular Diseases, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Trust, London, United Kingdom; Department of Neuromuscular Diseases, UCL Institute of Neurology, London, United Kingdom.
⁴ The Abigail Wexner Research Institute at Nationwide Children's Hospital, Center for Gene Therapy, Columbus, OH, United States; The Ohio State University College of Medicine, Department of Pediatrics, Columbus, OH, United States.
⁵ Astellas Gene Therapies, Raleigh, NC, United States.
⁶ Favaloro Foundation, Buenos Aires, Argentina.
⁷ Patient advocate, Dublin, Ireland.
⁸ ATOM International, Ltd, Newcastle Upon Tyne, United Kingdom.
⁹ The John Walton Muscular Dystrophy Research Centre, Newcastle University and Newcastle Hospitals NHS, Foundation Trust, Newcastle Upon Tyne, United Kingdom.
¹⁰ Duchenne UK, Hammersmith, United Kingdom.
¹¹ George Washington University School of Medicine and Health Sciences, Pittsburgh, PA, United States.
¹² Aparito, Wrexham, United Kingdom.
¹³ Physiotherapy Department, University of Pretoria, Pretoria, South Africa.
¹⁴ The National Rehabilitation Centre for Neuromuscular Diseases, Aarhus, Denmark.
¹⁵ Casimir, Seattle, WA, United States.
¹⁶ Coalition to Cure Calpain 3, Westport, CT, United States.
¹⁷ University of Oxford, Department of Paediatrics, Oxford, United Kingdom.
¹⁸ Edgewise Therapeutics, Boston, MA, United States.
¹⁹ John Walton Muscular Dystrophy Research Centre, Newcastle upon Tyne, United Kingdom.
²⁰ University of Minnesota, Minneapolis, MN, United States.
²¹ Cure VCP Disease, Americus, GA, United States.
²² Fondazione Italiana Sclerosi Multipla, Rome, Italy.
²³ Systserv SA, Patras, Greece.
²⁴ The University of Sydney Discipline of Physiotherapy, Sydney, Australia.

PMID: 36965197
DOI: 10.1016/j.nmd.2023.02.011

No abstract available

Keywords: Assessment; Care; Clinical outcome; Function; Neuromuscular disorders; Remote; Video.

Publication types

Clinical Conference
Research Support, Non-U.S. Gov't

MeSH terms

COVID-19*
Data Collection
Humans
Netherlands
Neuromuscular Diseases* / diagnosis
Neuromuscular Diseases* / therapy
Outcome Assessment, Health Care