Understanding Preferences for Characteristics of MND Drug Treatments
Research type
Research Study
Full title
Finding the value that people with MND place on different characteristics of their drug treatments using a discrete choice experiment
IRAS ID
365258
Contact name
Amy Clift
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Background:
Motor Neuron Disease (MND), most commonly in the form of amyotrophic lateral sclerosis (ALS) is a progressive disease caused by neurodegeneration of the motor neurons leading to the weakening of muscles and loss of functionality. MND is currently incurable and death usually occurs within 2-4 years of diagnosis. The drug treatments for MND only offer modest benefits to survival and can also burden the quality of life of people with MND from the route and frequency of administration, clinical appointments, and side effects. There is a vast and continuous number entering clinical trials with the aim to eventually find a cure. Identifying people with MNDs preferences for treatment options is vital for delivering the most effective and patient-centric care.Methods:
This project will be an online discrete choice experiment, a type of stated preference measure used to model preferences and predict choices by having people select from hypothetical alternatives with varying characteristics (attributes and levels). Our target recruitment is 150 people with MND across the UK. Potential participants will be identified by the direct clinical (NHS) care team, through TiM-R or through support groups through charities such as the Motor Neuron Disease Association (MNDA). The survey can be accessed from a QR code and/or weblink on the participant information sheet and after reading the participant information sheet participants can complete the questionnaire online straight away. Including gaining consent the survey will take around 25 minutes to complete. The survey has three parts as is standard with the methodology of a DCE. In the first part participants will be asked questions about themselves and their health. In the second part they will be asked 10 times to choose which of two treatment options they prefer. In the third part, they will be asked what they thought of the survey.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
25/YH/0269
Date of REC Opinion
16 Dec 2025
REC opinion
Further Information Favourable Opinion