Online assessment of ALS functional rating scale compares well to in-clinic evaluation: a prospective trial

Amyotroph Lateral Scler. 2012 Feb;13(2):210-6. doi: 10.3109/17482968.2011.633268.


Self-assessment of symptom progression in chronic diseases is of increasing importance in clinical research, patient management and specialized outpatient care. Against this background, we developed a secure internet platform ( that allows online assessment of the revised ALS Functional Rating Scale (ALSFRS-R) and other established self-assessment questionnaires. We developed a secure and closed internet portal to assess patient reported outcomes. In a prospective, controlled and stratified study, patients conducted a web-based self-assessment of ALSFRS-R compared to on-site assessment. On-site and online assessments were compared at baseline (n = 127) and after 3.5 months (n = 81, 64%). Results showed that correlation between on-site evaluation and online testing of ALSFRS-R was highly significant (r = 0.96; p < 0.001). The agreement of both capturing methods (online vs. on-site) was excellent (mean interval, 8.8 days). The adherence to online rating was high; 75% of patients tested on-site completed a follow-up online visit (mean 3.5 months, SD 1.7). We conclude that online self-assessment of ALS severity complements the well-established face-to-face application of the ALSFRS-R during on-site visits. The results of our study support the use of online administration of ALSFRS-R within clinical trials and for managing the care of ALS patients.

Publication types

  • Clinical Trial
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living*
  • Adult
  • Aged
  • Aged, 80 and over
  • Ambulatory Care Facilities*
  • Amyotrophic Lateral Sclerosis / physiopathology*
  • Disease Progression
  • Female
  • Humans
  • Internet*
  • Male
  • Middle Aged
  • Prospective Studies
  • Self-Assessment*
  • Severity of Illness Index*
  • Surveys and Questionnaires