How can technology and telemedicine play a role in MND care and research?
A symposium session described how digital devices and telemedicine could support MND care and research at home. Small studies found that sleep sensors captured changes over time and that remotely completed ALSFRS-R scores were strongly associated with clinic scores. A trial experience also suggested that participants and research sites generally favoured remote visits, although remote breathing assessments presented challenges.
Why this matters
Home-based measurements could make monitoring and research participation more convenient for some people with MND, particularly when travel, disease progression or caregiver availability make clinic visits difficult. These findings do not yet change treatment or establish that remote tools improve care. More research is needed to determine how often assessments should be completed and whether they provide meaningful clinical information.
Limitations and context
This is an organisational blog summarising presentations from a symposium, not a peer-reviewed primary research report. The sleep-sensor study included 16 people with MND, and the home-assessment study included 33. The reported findings were initial or exploratory, and the COURAGE-ALS drug trial was stopped in March 2023 after showing no evidence of effect on MND. Remote breathing assessments also had technology and accuracy problems.