A limitation in clinical trials in ALS and other progressive neurological are the infrequent (e.g. 1-3 months) clinical trial visits that are taxing on patient and caregivers. By performing assessments frequently at home, we theorized more accurate assessments of progression for each subject could be obtained, increasing sensitivity to drug effect.

Of 71 ALS patients recruited, an average of 40 patients completed the entire study  for all study variables. Frequent data collection provided greatly improved approximations of progression rate. For example, ALSFRS-R scores showed a mean gradient of -0.017(±SD=0.022) with weekly measurements and -0.016 (±SD=0.029) with monthly. This would translate  into 150 patients needed for a clinical trial if measured weekly vs. 301 patients if measured monthly. Similarly, with daily left-hand grip measurements, 83 patients would need to be measured daily versus 161 patients if tested monthly. Participants generally had positive views on the experience of collecting their data.

Despite substantial drop-out, the data obtained underscores the power of frequent at-home measurements. Where possible, regular at-home assessments should be adopted as a standard approach for clinical trials in degenerative neurological disease.