biostudies-literatureBoddy SLNational Institute for Health Research (NIHR)Motor Neurone Disease AssociationMarie Curie249-258https://www.ebi.ac.uk/biostudies/studies/S-EPMC12011019biostudies-literatureUnknown26(3-4)<i>Objective</i>: The Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) is a commonly used outcome measure in clinical trials for motor neuron disease (MND) therapies. As such, understanding how differences in scores relate to patient perception of their disease status is important when interpreting ALSFRS-R data. Our study sought to estimate the minimal important difference (MID) for the ALSFRS-R, the smallest difference in scores at which patients perceive a change in their quality of life. <i>Methods</i>: Data were collected as part of a longitudinal, observational saliva management study, ProSec3. These included both the ALSFRS-R and a global rating of change question (GRoC), which asked participants to rate how their disease had progressed since the previous visit. AnchAmyotrophic lateral sclerosis & frontotemporal degenerationEstimating the minimum important difference in the ALSFRS-R-instrument in people living with MND.PMC12011019NIHR301648MCRGS-07-16-13Faull CYoung CRoberts RWalters SJKenwrick ABamford HMcDermott CGarcia-Reitboeck PChhetri SKDickinson LKane CLambert TAli APROSEC3 STUDY GROUPGarrood LWalsh THanemann OSimpson RMNewton JOrrell RTurner MRCarrim JShorthose KBennett MBatts CDavies SMacArtney JMorrison IBoddy SLFelton TClarke GCawley DHamdalla HAl-Chalabi AWilliams TMcDermott CJAnnandale JMorrison SCrawley FVriens JChandran SPreston JfalseEstimating the minimum important difference in the ALSFRS-R-instrument in people living with MND.<i>Objective</i>: The Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) is a commonly used outcome measure in clinical trials for motor neuron disease (MND) therapies. As such, understanding how differences in scores relate to patient perception of their disease status is important when interpreting ALSFRS-R data. Our study sought to estimate the minimal important difference (MID) for the ALSFRS-R, the smallest difference in scores at which patients perceive a change in their quality of life. <i>Methods</i>: Data were collected as part of a longitudinal, observational saliva management study, ProSec3. These included both the ALSFRS-R and a global rating of change question (GRoC), which asked participants to rate how their disease had progressed since the previous visit. Anch2025-01-01T00:00:00Z2025 May2025-07-01T03:05:07.661Z2025-07-01T03:05:07.661ZS-EPMC120110193989844610.1080/21678421.2024.2447916