Accurate ALSFRS-R scores can be generated from retrospective review of clinic notes

Noah Lechtzin, Nicholas J. Maragakis, Richard Kimball, Anne Busse, Virginia Hoffman, Lora Clawson

Research output: Contribution to journalArticlepeer-review

4 Scopus citations


Retrospective studies are important in ALS but require markers of disease severity to enable risk adjustment and to allow fair comparisons between patient groups. The ALSFRS-R could be used as such a measure. This study aimed to determine if accurate ALSFRS-R scores could be generated by reviewing clinic notes. Five investigators reviewed 100 de-identified clinic notes to generate estimated ALSFRS-R scores. These scores were compared to ALSFRS-R scores completed by patients within three months of the clinic note. The retrospective ALSFRS-R scores did not differ significantly from the actual scores (mean retrospective score 38.7 ± 5 vs. actual score 38.4 ± 6, p = 0.5). The intra-class correlation coefficient between actual and retrospective scores confirmed reasonable agreement (rho = 0.53, p <0.001). Bland Altman analysis also confirmed good agreement between the actual and retrospective scores. This study indicates that ALSFRS-R scores can be accurately reproduced from information in clinic notes and should be considered as a marker of disease severity for use in retrospective studies.

Original languageEnglish (US)
Pages (from-to)244-247
Number of pages4
JournalAmyotrophic Lateral Sclerosis
Issue number4
StatePublished - 2009


  • Disease severity
  • Epidemiology
  • Motor neuron disease
  • Retrospective studies

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology


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