Understanding Preferences for Characteristics of MND Drug Treatments

Finding the value that people with MND place on different characteristics of their drug treatments using a discrete choice experiment

UK Chief Investigator

Alys Griffiths

Research summary

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.

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.

Current status

In set-up

Key dates

Planned opening date: 1st February 2026

Planned recruitment end date: 1st August 2026

Recruitment groups

Patients with MND

Recruitment target

175 participants

Click here to see how many participants have been recruited into this study to date (external link to the NIHR public study search)

Locations

• Sheffield, PI: to be confirmed. 

Contact details

Email Amy Clift amlclift1@sheffield.ac.uk

Inclusion / exclusion criteria

Inclusion criteria

• Able to provide informed consent and engage in the survey. This will be guided by the individual and the clinician during the decision point to share the participant information sheet

• A formal diagnosis of MND

• Able to understand spoken English or be willing to have a family member, carer or translator present to translate

• Aged 18 years and above

Exclusion criteria

• Aged below 18 years

• Unable to provide informed consent and engage in the survey

• Unconfirmed diagnosis of MND

• Not able to understand spoken English and provide informed consent in English and not willing to have a family member, carer or translator present to translate.

Funder

NIHR

Sponsor

University of Sheffield

Study design

Observational