Examining the impact of the COVID-19 pandemic on people with MND

An online survey to know how people with MND have been affected by the pandemic, and whether this has had any impact on their MND health & social care.

Researchers at the University of Sheffield, UCL, KCL, UEA and the University of Liverpool are interested in the experiences of people with motor neuron disease (MND) during the COVID-19 pandemic. We would like to know how people with MND have been affected by the pandemic, and whether this has had any impact on their MND health and social care (such as hospital appointments and access to services and care).

What does taking part involve?

If you decide to take part in the study then you will be invited to complete an online survey. You will be asked a series of questions about the COVID-19 pandemic and your MND health and social care. You will also be asked some questions about your MND symptoms and basic questions about yourself (no identifying information). The survey should take approximately 30 minutes to complete.

You will only be asked to complete this online survey on one occasion. You can stop the survey at any point, without having to give a reason. You will also be able to save your progress and come back to it another time if you wish.

If you complete some but not all of the questions in the survey then we would use any information that you provided up to the point that you stopped the survey. If there are particular questions that you would prefer not to answer then you will be able to indicate this in the survey, without having to give a reason.

Study location

This study is being conducted by researchers at:

  • University of Sheffield (Professor Christopher McDermott and Dr Alexis Collins),
  • University College London (Dr Rebecca Gould),
  • University of East Anglia (Dr Mark Coulson),
  • King's College London (Professor Ammar Al-Chalabi),
  • University of Liverpool (Professor Carolyn Young)

If you would like to take part in the online survey, please click on the button below:

Who can take part?

We are asking approximately 100 people who meet the following criteria to take part in this study:

• Aged 18 years or more;
• Diagnosis of MND
• Currently living in England, Ireland, Scotland or Wales;
• Sufficient ability to read and understand English;
• No diagnosis of dementia.

How can I take part?

To take part in the survey, use the button on this page.


If you have any questions or require any further information about this study then you can contact Dr Rebecca Gould (r.gould@ucl.ac.uk, Tel: 020 7679 9225) or Dr Mark Coulson (m.coulson@uea.ac.uk, Tel: 01603 591600).

Expiry date: 16 November 2020

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262