This paper is in the following e-collection/theme issue:

Viewpoints and Perspectives (521) Wearable Devices and Sensors (900) Theoretical Frameworks and Concepts (258) Neurology and Neurosciences (189) Telehealth and Telemonitoring (1710) New Methods (956) Adoption and Change Management of eHealth Systems (729)

Published on in Vol 23, No 9 (2021): September

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/28766, first published .
A Road Map for Remote Digital Health Technology for Motor Neuron Disease

A Road Map for Remote Digital Health Technology for Motor Neuron Disease

A Road Map for Remote Digital Health Technology for Motor Neuron Disease

Authors of this article:

Ruben P A van Eijk1, 2 Author Orcid Image ;   Anita Beelen3, 4 Author Orcid Image ;   Esther T Kruitwagen3, 4 Author Orcid Image ;   Deirdre Murray5, 6 Author Orcid Image ;   Ratko Radakovic7, 8, 9, 10, 11 Author Orcid Image ;   Esther Hobson12 Author Orcid Image ;   Liam Knox12 Author Orcid Image ;   Jochem Helleman3, 4 Author Orcid Image ;   Tom Burke5, 13 Author Orcid Image ;   Miguel Ángel Rubio Pérez14 Author Orcid Image ;   Evy Reviers15 Author Orcid Image ;   Angela Genge16 Author Orcid Image ;   Frederik J Steyn17, 18, 19 Author Orcid Image ;   Shyuan Ngo18, 19, 20, 21 Author Orcid Image ;   John Eaglesham22 Author Orcid Image ;   Kit C B Roes23 Author Orcid Image ;   Leonard H van den Berg1 Author Orcid Image ;   Orla Hardiman24, 25 Author Orcid Image ;   Christopher J McDermott12 Author Orcid Image
Article Authors Cited by (21) Tweetations (16) Metrics

Journals

  1. Holdom C, van Unnik J, van Eijk R, van den Berg L, Henderson R, Ngo S, Steyn F. Use of hip- versus wrist-based actigraphy for assessing functional decline and disease progression in patients with motor neuron disease. Journal of Neurology 2023;270(5):2597 View
  2. Knox L, McDermott C, Hobson E. Telehealth in long-term neurological conditions: the potential, the challenges and the key recommendations. Journal of Medical Engineering & Technology 2022;46(6):506 View
  3. Hayden C, Murphy B, Hardiman O, Murray D. Measurement of upper limb function in ALS: a structured review of current methods and future directions. Journal of Neurology 2022;269(8):4089 View
  4. Helleman J, Bakers J, Pirard E, van den Berg L, Visser-Meily J, Beelen A. Home-monitoring of vital capacity in people with a motor neuron disease. Journal of Neurology 2022;269(7):3713 View
  5. Beswick E, Fawcett T, Hassan Z, Forbes D, Dakin R, Newton J, Abrahams S, Carson A, Chandran S, Perry D, Pal S. A systematic review of digital technology to evaluate motor function and disease progression in motor neuron disease. Journal of Neurology 2022;269(12):6254 View
  6. Helleman J, Johnson B, Holdom C, Hobson E, Murray D, Steyn F, Ngo S, Henders A, Lokeshappa M, Visser-Meily J, van den Berg L, Hardiman O, Beelen A, McDermott C, van Eijk R. Patient perspectives on digital healthcare technology in care and clinical trials for motor neuron disease: an international survey. Journal of Neurology 2022;269(11):6003 View
  7. Ghasemi M, Emerson C, Hayward L. Outcome Measures in Facioscapulohumeral Muscular Dystrophy Clinical Trials. Cells 2022;11(4):687 View
  8. Meyer T, Spittel S, Grehl T, Weyen U, Steinbach R, Kettemann D, Petri S, Weydt P, Günther R, Baum P, Schlapakow E, Koch J, Boentert M, Wolf J, Grosskreutz J, Rödiger A, Ilse B, Metelmann M, Norden J, Koc R, Körtvélyessy P, Riitano A, Walter B, Hildebrandt B, Schaudinn F, Münch C, Maier A. Remote digital assessment of amyotrophic lateral sclerosis functional rating scale – a multicenter observational study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 2023;24(3-4):175 View
  9. Maier A, Münch C, Meyer T. Der Einsatz von Patient-reported Outcome Measures (PROM) und die Perspektive digitaler Biomarker bei der Amyotrophen Lateralsklerose. Klinische Neurophysiologie 2023;54(01):28 View
  10. van Kessel R, Roman-Urrestarazu A, Anderson M, Kyriopoulos I, Field S, Monti G, Reed S, Pavlova M, Wharton G, Mossialos E. Mapping Factors That Affect the Uptake of Digital Therapeutics Within Health Systems: Scoping Review. Journal of Medical Internet Research 2023;25:e48000 View
  11. Brem A, Kuruppu S, de Boer C, Muurling M, Diaz-Ponce A, Gove D, Curcic J, Pilotto A, Ng W, Cummins N, Malzbender K, Nies V, Erdemli G, Graeber J, Narayan V, Rochester L, Maetzler W, Aarsland D. Digital endpoints in clinical trials of Alzheimer’s disease and other neurodegenerative diseases: challenges and opportunities. Frontiers in Neurology 2023;14 View
  12. Van Unnik J, Bakers J, Kokx S, Van Den Berg L, Visser-Meily J, Beelen A, Van Eijk R. Portable fixed dynamometry enables home-based, reliable assessment of muscle strength in patients with amyotrophic lateral sclerosis: a pilot study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 2023;24(7-8):651 View
  13. Curry M, Peterson I, Belter L, Sarr F, Whitmire S, Schroth M, Jarecki J. Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights. Neurology and Therapy 2023;12(5):1631 View
  14. Erb M, Calcagno N, Brown R, Burke K, Scheier Z, Iyer A, Clark A, Higgins M, Keegan M, Gupta A, Johnson S, Chew S, Berry J. Longitudinal comparison of the self-administered ALSFRS-RSE and ALSFRS-R as functional outcome measures in ALS. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 2024;25(5-6):570 View
  15. van Unnik J, Meyjes M, Janse van Mantgem M, van den Berg L, van Eijk R. Remote monitoring of amyotrophic lateral sclerosis using wearable sensors detects differences in disease progression and survival: a prospective cohort study. eBioMedicine 2024;103:105104 View
  16. Torri F, Vadi G, Meli A, Loprieno S, Schirinzi E, Lopriore P, Ricci G, Siciliano G, Mancuso M. The use of digital tools in rare neurological diseases towards a new care model: a narrative review. Neurological Sciences 2024;45(10):4657 View
  17. Bhushan N, Romano C, Gras-Najjar J, Reno J, Rockwood N, Quattrone W, Adams E, Kelly B, McLeod L, Bhavnani S, Bocell F, Campbell M, Kontson K, Reasner D, Zhang C, Retzky S. Remote-Use Applications of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised Clinical Outcome Assessment Tool: A Scoping Review. Value in Health 2024;27(10):1454 View
  18. Meyer T, Schumann P, Weydt P, Petri S, Weishaupt J, Weyen U, Koch J, Günther R, Regensburger M, Boentert M, Wiesenfarth M, Koc Y, Kolzarek F, Kettemann D, Norden J, Bernsen S, Elmas Z, Conrad J, Valkadinov I, Vidovic M, Dorst J, Ludolph A, Hesebeck‐Brinckmann J, Spittel S, Münch C, Maier A, Körtvélyessy P. Clinical and patient‐reported outcomes and neurofilament response during tofersen treatment in SOD1‐related ALS—A multicenter observational study over 18 months. Muscle & Nerve 2024;70(3):333 View
  19. Knox L, Coates E, Griffiths A, Ali Y, Hobson E, McDermott C. Development and Evaluation of the Telehealth in Motor Neuron Disease System: The TIME Study Protocol. JMIR Research Protocols 2024;13:e57685 View
  20. Paccoud I, Valero M, Marín L, Bontridder N, Ibrahim A, Winkler J, Fomo M, Sapienza S, Khoury F, Corvol J, Fröhlich H, Klucken J. Patient perspectives on the use of digital medical devices and health data for AI-driven personalised medicine in Parkinson’s Disease. Frontiers in Neurology 2024;15 View