Portaro et al., 2018 [9] |
FSHD |
Open label, only treated group |
Video-conferencing, telemonitoring of cardiorespiratory variables and telerehabilitation |
All patients completed the study |
Dropping of hospital admission for check-up; mild improvement in mood and emotional status of all the patients |
Increased autonomy and self-monitoring preventing unnecessary hospital admission |
Short duration (only 6 mo) |
Zamarron et al., 2013 [10] |
FSHD, ALS, DMD |
Open label, only treated group |
Remote monitoring of biological signals, video-conference |
All patients completed the study |
Acceptable level of satisfaction, dropping of hospital admission (18 to 3 in a previous period of same duration) |
Long-term monitoring (5 yr); high level of feasibility |
No existing standard of care in telemedicine; lag in video connections, |
Martinez et al., 2021 [11] |
Rare neuromuscular disease |
Open, treated vs control |
Tele-assistance via skype video-conferencing in 7 wk |
All patients completed the study |
Improving of quality of life in patients with moderate (both physical and psychosocial field) to severe (only psychosocial) disability degree |
Design of the study, sample size, multidomain evaluation |
technical problems; outcome measures not specific for diseases |
Rockette-Wagner et al., 2021 [28] |
Inflammatory myopathy |
Open label, observational |
Remote monitoring with wearable devices, FDA approved |
29/44 (66%) provided valid data at baseline and follow up |
Portable devices output variables had good reliability and validity for changes in the physical activity of IIM patients |
Large patients cohort and longitudinal data |
Output variables of portable devices not yet validated; cohort heterogeneity, |
Sobieranska et al., 2020 [29] |
DMD |
Open label, observational |
Tele rehabilitation with online workshop |
45 respondent out of 69 enrolled (69%), 16 (23%) participated in live workshop; 132 total visualization of online videos |
Online videos are more acceptable than live sessions; motor assessment results will be presented |
Limited data available |
Limited data available |