In September, we proudly hosted the annual MND SMART Gathering at The University of Edinburgh’s South Hall complex, set against the backdrop of the iconic Arthur’s seat. The day brought together many of the teams behind the trial for connection and collaboration, and proved to be an invaluable opportunity to share experiences, reflect on progress and discuss our plans for the future.
The presentations were kicked off by Professor Suvankar Pal, MND SMART Co-Lead Investigator, who shared an overview of progress thus far highlighting milestones from 2025.
The next series of presentations explored sample management, data integrity and how to prepare for a monitoring visit, equipping our local site researchers with practical insights into how to make trial delivery smoother and more efficient.
In line with our commitment to promote equity of access to research opportunities for people with MND, we heard from lead research nurses, Ethan (Edinburgh site) and Angelie (Royal London Site) on their experiences of delivering the trial across diverse populations.
After a short refreshment break we picked back up with an engaging session on Patient and Public Involvement and Engagement in MND-SMART and heard about the many ways in which the MND-SMART PAG shape our trial design and delivery. The session featured a panel discussion with our colleagues and collaborators with lived experience of Motor Neuron Disease.
Looking towards the future, the next sessions covered upcoming protocol updates, evolution in drug discovery techniques and the potential application of voice as a biomarker for neurodegenerative diseases.
The gathering was well attended by research nurses and investigators, with representation from 18 of our 25 trial sites. We also welcomed our drug discovery colleagues at the UK Dementia Research Institute laboratories (Edinburgh), representatives of our Sponsorship team, our drug manufacturers at Huddersfield Pharmacy Specials and members of our Patient Advisory Group (PAG).
Research Nurse Amy (Craigavon site) said
As a new member to the MND SMART trial team in the Northern Ireland site, I was delighted to be invited to the summer 2025 gathering in Edinburgh. The entire team throughout the UK are passionate about this trial and it is very inspiring and exciting to be a part of. The opportunity to meet and share ideas with my colleagues in person from across UK was invaluable.
Similar feelings were echoed by Research Sister, Kat (Southampton site), who said
Thank you to MND SMART Team in Edinburgh for giving our site this incredible opportunity to attend the annual gathering again. This was a fantastic occasion for me to represent my research team at University Hospital Southampton and to catch up and share experiences of working on MND SMART Trial with the other 24 sites. As always, the Edinburgh Team provided an interesting and stimulating agenda with updates on recruitment and future planning, speeches about drug screening, sample management, biomarkers and many more.
The event concluded with closing remarks from Chief Investigator, Professor Siddharthan Chandran, who commended all collaborators for their diligence and commitment to ensuring safe and successful trial delivery across the UK. He reiterated his belief that through continued collaboration, we will identify a drug that will improve outcomes for people living with MND.
MND-SMART is led by the Euan MacDonald Centre for MND Research at the University of Edinburgh. The trial is a flagship project of the UK Dementia Research Institute.
The trial is funded by the Euan MacDonald Centre for MND Research, MND Scotland, MND Association, the Alan Davidson Foundation, My Name’5 Doddie Foundation and Baillie Gifford.