ALS Functional Rating Scale – Revised (ALSFRS-R)
Tracks how ALS affects everyday physical function, across speech, movement, and breathing.
By Claire White
- Self-administered. A caregiver or clinician can also complete it.
- 12 questions. Takes about five minutes.
- Score from 0 to 48. A higher score means more function retained.
Psychometrics
Internal consistency from Gordon and colleagues (2004). The three rater and telephone coefficients are from Kaufmann and colleagues (2007), 41 to 54 ratings in a multicentre trial cohort. Self-administration against clinician scoring is from Montes and colleagues (2006), 60 consecutive ALS clinic patients. Higher is better.
What does the ALSFRS-R measure?
The ALSFRS-R asks 12 questions across four areas of daily function. Speech, salivation, and swallowing cover bulbar function. Handwriting, cutting food, and dressing cover fine motor function. Turning in bed, walking, and climbing stairs cover gross motor function. The last questions cover breathing.
Each question is scored from 0 to 4, where 4 is normal function. The 12 answers add up to a single score.
What does an ALSFRS-R score mean?
The total runs from 0 to 48. A higher score means more function is retained. No agreed severity bands for the total are published, and the measurement literature argues against reading the total on its own, because the scale is not unidimensional. What is published is the four domains the items group into, each scored 0 to 12.
| Domain | Items | Range |
|---|---|---|
| Bulbar | Speech, salivation, swallowing | 0 to 12 |
| Fine motor | Handwriting, cutting food, dressing and hygiene | 0 to 12 |
| Gross motor | Turning in bed, walking, climbing stairs | 0 to 12 |
| Respiratory | Dyspnea, orthopnea, respiratory insufficiency | 0 to 12 |
Most people take the ALSFRS-R more than once, because the change in score over time is what tracks the course of the condition. Across seven European population cohorts the average rate of decline was 0.89 points a month over 24 months, with 95 percent of people falling between 0.04 and 1.96 points a month. A difference of about 3.8 points over three months is the smallest change people themselves report noticing in their quality of life.
The score is reference information for you and your care team. It does not diagnose ALS and does not set your treatment.
How the ALSFRS-R is administered
- Administered by
- The person with ALS, a caregiver, or a clinician
- Time to administer
- About 5 minutes
- Cost
- Free to take here.
- Training required
- None
- Remote administration
- Validated by telephone and by smartphone self-entry
- Available languages
- English, with validated translations including Polish
Which conditions is the ALSFRS-R used for?
Related instruments
- Edinburgh Cognitive and Behavioural ALS Screen (ECAS)Cognition and behaviour in ALS, the half the ALSFRS-R does not cover
- EQ-5DGeneral health-related quality of life, comparable across conditions
- NASA Task Load Index (NASA-TLX)Effort and workload, used when evaluating assistive and brain-computer interface systems
ALSFRS-R questions, answered
How is the ALSFRS-R scored?
Twelve questions, each scored from 0 to 4, where 4 is normal function. The 12 answers are summed, so the total runs from 0 to 48.
What is a normal ALSFRS-R score?
48, the maximum, is full function on every question. Below that there are no published severity bands, and no single score marks a threshold. The number that carries information is the change between two administrations, and the rate of that change.
How long does the ALSFRS-R take?
About five minutes.
Who can administer the ALSFRS-R?
The person with ALS, a caregiver, or a clinician. The self-administered version agrees with clinician scoring at an intraclass correlation of 0.93, and telephone administration agrees with in-person at 0.97.
Is the ALSFRS-R free?
Yes. It is free to take here. No training or certification is needed.
What counts as a meaningful change in ALSFRS-R score?
About 3.8 points over three months on the standard summed total, or about 2 points when the total is interval-transformed. Those are the smallest differences at which people report a perceptible change in their quality of life.
Does the ALSFRS-R measure thinking?
No. It covers physical function only. Cognitive and behavioural change in ALS is screened with the ECAS.
Evidence, psychometrics and provenance
Created by Cedarbaum and colleagues in 1999, who added questions on dyspnea, orthopnea, and the need for ventilatory support to the original ALS Functional Rating Scale. Patient self-report has been validated against in-clinic clinician scoring, and telephone and smartphone administration against in-person interviews.
- Construct validity
- Scores correlate with quality of life on the Sickness Impact Profile (Cedarbaum, 1999)
- Rate of decline
- 0.89 points per month on average over 24 months (van Eijk, 2025)
- Minimum important difference
- 3.8 points over 3 months, summed scoring (Boddy, 2025)
- Dimensionality
- Multidimensional on Rasch analysis; report the domain subscores
A note on the total score. Four independent analyses, two by Rasch modelling and two by item response theory and factor analysis, agree that the 12 items do not measure one thing. Bulbar and motor subscores carry prognostic information that the summed total obscures, and respiratory subscores add little once the other two are accounted for. The alternative the literature offers is an interval-transformed total.
References
Reliability, validation and self-report
- 2.Kaufmann P, et al; QALS study group. Excellent inter-rater, intra-rater, and telephone-administered reliability of the ALSFRS-R in a multicenter clinical trial. Amyotroph Lateral Scler. 2007;8(1):42-46.
- 3.Montes J, et al. Development and evaluation of a self-administered version of the ALSFRS-R. Neurology. 2006;67(7):1294-1296.
- 4.Gordon PH, Miller RG, Moore DH. ALSFRS-R. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5(Suppl 1):90-93.
- 5.Maksymowicz S, et al. Validation of the revised Amyotrophic Lateral Sclerosis Functional Rating Scale in Poland and its reliability in conditions of the medical experiment. Neurol Sci. 2021;42(3):943-949.
- 6.Erb MK, et al. Longitudinal comparison of the self-administered ALSFRS-RSE and ALSFRS-R as functional outcome measures in ALS. Amyotroph Lateral Scler Frontotemporal Degener. 2024;25(5-6):570-580.
Structure and dimensionality
- 7.Franchignoni F, et al. Evidence of multidimensionality in the ALSFRS-R Scale: a critical appraisal on its measurement properties using Rasch analysis. J Neurol Neurosurg Psychiatry. 2013;84(12):1340-1345.
- 8.Franchignoni F, et al; ERRALS Group. A further Rasch study confirms that ALSFRS-R does not conform to fundamental measurement requirements. Amyotroph Lateral Scler Frontotemporal Degener. 2015;16(5-6):331-337.
- 9.Bacci ED, et al; PRO-ACT Consortium. Item response theory analysis of the ALSFRS-R in the Pooled Resource Open-Access ALS Clinical Trials Database. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17(3-4):157-167.
- 10.Rooney J, et al. What does the ALSFRS-R really measure? A longitudinal and survival analysis of functional dimension subscores in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2017;88(5):381-385.
- 11.Bakker LA, et al. Assessment of the factorial validity and reliability of the ALSFRS-R: a revision of its measurement model. J Neurol. 2017;264(7):1413-1420.
Responsiveness and progression
- 12.Boddy SL, et al; PROSEC3 Study Group. Estimating the minimum important difference in the ALSFRS-R-instrument in people living with MND. Amyotroph Lateral Scler Frontotemporal Degener. 2025;26(3-4):249-258.
- 13.van Eijk RPA, et al. Natural history of the revised ALS functional rating scale and its association with survival: the PRECISION-ALS Extant Study. Amyotroph Lateral Scler Frontotemporal Degener. 2025;26(sup1):30-40.
This assessment uses a validated instrument and is reference information, not a diagnosis.