ALSFRS-R Online Validation
Research type
Research Study
Full title
Validation study of administration of an online Amyotrophic Lateral Sclerosis Functional Rating Scale (Revised)
IRAS ID
217261
Contact name
Kevin Talbot
Contact email
Sponsor organisation
University of Oxford
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
The ALSFRS-R is a functional rating scale designed to be administered by a healthcare professional asking a person with motor neuron disease (MND) a series of questions about activities of daily living that they are able or unable to perform by themselves. It is widely used in clinical practice and research. There has been previous research showing that people can complete the ALSFRS-R themselves online, using the original ALSFRS-R questions (Maier et al., 2012). This research showed that the scores on the ALSFRS-R completed by people with MND matched the scores from questionnaires completed by health professionals quite closely, meaning that a self-administered ALSFRS-R can be a scientifically valid way of measuring MND symptoms. We propose to modify the ALSFRS-R so that it is suitable for online administration by patients themselves, and to confirm that such an administration maintains its scientific validity while minimising any potential distress caused to people with MND by the wording of the questions. We have converted the ALSFRS-R scale to a series of questions to bring it in line with standard operating procedures and ensure the wording is free of medical jargon and is appropriately sensitive to people who have just received a diagnosis of MND. We hope to use this modified version of the ALSFRS-R in future research.
REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
17/NW/0518
Date of REC Opinion
25 Aug 2017
REC opinion
Favourable Opinion