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A Road Map for Remote Digital Health Technology for Motor Neuron Disease.
van Eijk, Ruben P A; Beelen, Anita; Kruitwagen, Esther T; Murray, Deirdre; Radakovic, Ratko; Hobson, Esther; Knox, Liam; Helleman, Jochem; Burke, Tom; Rubio Pérez, Miguel Ángel; Reviers, Evy; Genge, Angela; Steyn, Frederik J; Ngo, Shyuan; Eaglesham, John; Roes, Kit C B; van den Berg, Leonard H; Hardiman, Orla; McDermott, Christopher J.
  • van Eijk RPA; UMC Utrecht Brain Centre, University Medical Centre Utrecht, Utrecht, Netherlands.
  • Beelen A; Biostatistics & Research Support, Julius Centre for Health Sciences and Primary Care, University Medical Centre Utrecht, Utrecht, Netherlands.
  • Kruitwagen ET; Department of Rehabilitation, University Medical Centre Utrecht, Utrecht, Netherlands.
  • Murray D; Center of Excellence for Rehabilitation Medicine, University Medical Centre Utrecht and De Hoogstraat Rehabilitation, Utrecht, Netherlands.
  • Radakovic R; Department of Rehabilitation, University Medical Centre Utrecht, Utrecht, Netherlands.
  • Hobson E; Center of Excellence for Rehabilitation Medicine, University Medical Centre Utrecht and De Hoogstraat Rehabilitation, Utrecht, Netherlands.
  • Knox L; Academic Unit of Neurology, Trinity College Dublin, Dublin, Ireland.
  • Helleman J; Department of Physiotherapy, Beaumont Hospital, Dublin, Ireland.
  • Burke T; Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, United Kingdom.
  • Rubio Pérez MÁ; Euan MacDonald Centre for Motor Neuron Disease Research, University of Edinburgh, Edinburgh, United Kingdom.
  • Reviers E; Norfolk and Norwich University Hospital, Norwich, United Kingdom.
  • Genge A; Alzheimer Scotland Dementia Research Centre, University of Edinburgh, Edinburgh, United Kingdom.
  • Steyn FJ; Centre for Cognitive Ageing and Cognitive Epidemiology, University of Edinburgh, Edinburgh, United Kingdom.
  • Ngo S; Department of Neuroscience, Sheffield Institute for Translational Neuroscien, University of Sheffield, Sheffield, United Kingdom.
  • Eaglesham J; Department of Neuroscience, Sheffield Institute for Translational Neuroscien, University of Sheffield, Sheffield, United Kingdom.
  • Roes KCB; Department of Rehabilitation, University Medical Centre Utrecht, Utrecht, Netherlands.
  • van den Berg LH; Center of Excellence for Rehabilitation Medicine, University Medical Centre Utrecht and De Hoogstraat Rehabilitation, Utrecht, Netherlands.
  • Hardiman O; Academic Unit of Neurology, Trinity College Dublin, Dublin, Ireland.
  • McDermott CJ; Department of Psychology, Beaumont Hospital, Dublin, Ireland.
J Med Internet Res ; 23(9): e28766, 2021 09 22.
Article in English | MEDLINE | ID: covidwho-1443964
ABSTRACT
Despite recent and potent technological advances, the real-world implementation of remote digital health technology in the care and monitoring of patients with motor neuron disease has not yet been realized. Digital health technology may increase the accessibility to and personalization of care, whereas remote biosensors could optimize the collection of vital clinical parameters, irrespective of patients' ability to visit the clinic. To facilitate the wide-scale adoption of digital health care technology and to align current initiatives, we outline a road map that will identify clinically relevant digital parameters; mediate the development of benefit-to-burden criteria for innovative technology; and direct the validation, harmonization, and adoption of digital health care technology in real-world settings. We define two key end products of the road map (1) a set of reliable digital parameters to capture data collected under free-living conditions that reflect patient-centric measures and facilitate clinical decision making and (2) an integrated, open-source system that provides personalized feedback to patients, health care providers, clinical researchers, and caregivers and is linked to a flexible and adaptable platform that integrates patient data in real time. Given the ever-changing care needs of patients and the relentless progression rate of motor neuron disease, the adoption of digital health care technology will significantly benefit the delivery of care and accelerate the development of effective treatments.
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Full text: Available Collection: International databases Database: MEDLINE Main subject: Motor Neuron Disease Type of study: Diagnostic study / Prognostic study Limits: Humans Language: English Journal: J Med Internet Res Journal subject: Medical Informatics Year: 2021 Document Type: Article Affiliation country: 28766

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Motor Neuron Disease Type of study: Diagnostic study / Prognostic study Limits: Humans Language: English Journal: J Med Internet Res Journal subject: Medical Informatics Year: 2021 Document Type: Article Affiliation country: 28766