Register interest

If you live in the UK, have been diagnosed with MND, and are interested in taking part in MND-SMART to test potential new treatments, this is where you can register your interest. 

With your consent we’ll share the information you provide with MND-SMART trial centre(s) close to you so they can contact you about taking part in the study when they open.

Whilst we are working hard to open trial sites across the UK, pressures on local healthcare research, including those caused by the COVID-19 pandemic, may unfortunately mean that a trial centre does not open near you.

Participants in clinical trials need to be followed up regularly to assess if potential treatments are working, and also so they can be monitored closely for safety. Due to this, trial centres are unable to assess people who live a long distance away and each centre has a certain capacity of how many participants they can recruit and monitor.

Although this may disappoint some people that they may not be able to take part in MND-SMART, this is an exciting time of rapid progression across all MND research in the UK. A number of different clinical trials are planned and good progress is being made in research labs worldwide to understand more about the disease and devise potential new treatments. Results from all of these studies including MND SMART will, over time, help provide information about the safety and effectiveness of drugs and therefore have the potential to benefit everyone living with MND. 

You can find out which MND-SMART centres are open on the Trial Centres page of our website. Go to the Trial Centres page

Please see our full privacy statement below.


Privacy statement

The information you provide will be used by the University of Edinburgh to communicate with you about taking part in MND-SMART. We’re storing your personal details because you have given us your explicit consent.

We’ll hold the personal data you provide for up to five years. It will be stored securely and will only be accessed by University of Edinburgh staff and MND-SMART trial personnel. If you decide you don’t want to take part in the trial and don’t want to be contacted by us again, please contact us and we will delete your personal data.

We’ll only share your personal data with your nearest MND-SMART trial centre(s).
We’ll not share your data with any other third party.

If you have any questions, please contact us on loth.mndsmart@nhslothian.scot.nhs.uk

This privacy statement is continued on the University of Edinburgh website at: Continued privacy statement

 

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