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My Name’5 Doddie Foundation continues commitment to MND-SMART - the UKs first platform trial for MND

24 January 2022

This month marks two years since the launch of MND-SMART, an innovative clinical trial from the Euan MacDonald Centre for MND Research at the University of Edinburgh. The trial is designed to identify medicines that slow, stop or reverse progression of MND.  

With support from a grant awarded by My Name’5 Doddie Foundation, MND-SMART has now recruited over 260 participants from 16 sites across the UK.

Olivia Bird, Research and Grants Officer at My Name’5 Doddie Foundation, said, “We are delighted to continue our involvement in this landmark trial in MND and it is brilliant to see what progress has been made, despite the challenges of working around a pandemic. We are incredibly grateful to the trial teams across the UK who have shown commitment and enthusiasm to get the trial up and running, and to our supporters who have gone to extraordinary lengths to raise much needed funds.”

MND-SMART is designed to test more than one drug at the same time and be adaptive so that researchers can modify their approach according to emerging results. The trial has so far been testing two active drugs and more drugs will be added, in due course, while medicines that prove ineffective will be dropped.

Developed by people with MND, clinical trial experts and key funders, the broad inclusion criteria enable many more people with MND across the UK to take part in research. The broad geographical spread of sites and patient focus has been fundamental in enabling people from all corners of the UK to take part, from Orkney to the Isle of Wight. The trial has recently opened at the University Hospital Wales in Cardiff to start recruitment from Wales.

Dr Suvankar Pal, Euan MacDonald Centre for MND Research, University of Edinburgh and Co-lead Investigator of MND-SMART, said, “Historically, you would have a two-armed trial that looks at one active drug against a placebo [dummy drug], but this trial design allows us to test many, many more active drugs simultaneously and therefore get a definitive answer [phase 3] more quickly, which is a much more efficient way of doing things.”

Funding from My Name’5 Doddie Foundation has supported the development of MND-SMART infrastructure at sites across the UK, including funding staff dedicated to the trial. A £250,000 grant was also awarded to Newcastle NHS Foundation Trust to facilitate recruitment of patients in the northeast of England.

Hayley Williams, Salford Royal NHS Foundation Trust and MND-SMART Research Nurse, said, “Having a role dedicated to MND-SMART has allowed me to take the time to focus on recruiting to the study and maintain follow-ups adequately. Being in a position to provide hope and positivity to patients living with a devastating, progressive disease is beyond rewarding, it is an honour to be part of the trial.”

Hayley’s hard work was recognised at the Clinical Research Network Greater Manchester Evening of Excellence; she won an Innovation Influencer Award for her commitment to the trial throughout the pandemic.

Prior to the launch of MND-SMART, only three of the sites had run clinical trials in MND in the last decade.

Dr Suvankar Pal said, “As a result of a grant from My Name’5 Doddie Foundation, and significant support from other funders, we’ve managed to build expertise in running MND clinical trials in areas where there wasn’t any before. We are offering opportunity and equity to people with MND.”

Judy Newton, Euan MacDonald Centre for MND Research, University of Edinburgh and MND Nurse Consultant, added, “We are extremely grateful to My Name’5 Doddie Foundation and its supporters for this funding, as well as the people with MND who selflessly take part in the trial for the benefit of the wider MND community.”

The expertise developed through MND-SMART will be hugely important in setting up future MND clinical trials, ensuring the legacy of the fundraising efforts will be felt for many years to come.

MND-SMART is funded by My Name’5 Doddie Foundation, Euan MacDonald Centre for MND Research and MND Scotland. For further information about MND-SMART, visit the trial website here.

About the Euan MacDonald Centre:

The Euan MacDonald Centre for MND Research based at the University of Edinburgh is a Scotland-wide network of 250 scientists, doctors and healthcare professionals. The Centre aims to use research to improve the lives of people living with MND and related conditions.

About My Name’5 Doddie Foundation:

My Name’5 Doddie Foundation has a clear vision of a world free of motor neuron disease. The charity was established by Doddie Weir and the trustees in November 2017 following Doddie’s diagnosis with MND. It was founded in response to his frustration at the lack of options given to MND patients – no effective treatment, no access to meaningful clinical trials and no hope.

The aims of the Foundation are simple:

To raise funds to aid research into the causes of MND and investigate potential cures.

To make grants to individuals suffering from MND, to enable them to live as fulfilled a life as possible.

For more information, please visit myname5doddie.co.uk or contact us on info@myname5doddie.co.uk

Connect with us on social media:

Twitter: @MNDoddie5
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Thank you to MND Scotland for the image. 

My Name’5 Doddie Foundation continues commitment to MND-SMART - the UKs first platform trial for MND

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