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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Miss
Amy
Clift
amlclift1@sheffield.ac.uk
Alys
Griffiths
alys.griffiths@sheffield.ac.uk
Systemic atrophies primarily affecting the central nervous system
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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 treatments for MND can also burden the quality of life of people with MND from the clinical appointments and side effects. This project is focusing on the preferences and factors affecting decision making for disease modifying drug treatments in MND. 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:
The study will use semi-structured interviews with people with MND. We will sample to include people with MND with a range of experiences with drug treatments.
Potential participants will be identified by their direct clinical (NHS) care team or, if the target recruitment sample of 20 participants is not achieved after 3 months, we will allow participants to self-identify through advertising. Participants will receive a participant information sheet and will be given 1 week to decide whether they would like to participate.
Each interview will last around 45-60 minutes although breaks or the opportunity to proceed on a future date will be allowed for reasons such as fatigue or distress. Interviews will be recorded on an electronic recording device and then later transcribed. Thematic analysis will be used to analyse the interview data through coding extracts of the data to generate themes. A final study report and also a lay summary will be produced for pwMND and a concise clinician guidance to increase the accessibility of the results.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Qualitative;
You can take part if:
You may not be able to take part if:
i) Aged below 18 years ii) Unable to provide informed consent (either written or verbal. iii)Unconfirmed/informal diagnosis of MND. iv) Unwilling to discuss MND drug treatment. v) 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.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by University of Sheffield and funded by NIHR Academy .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 64583
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