Associate feature: Beacon of Hope
NHS Research Scotland’s (NRS) neuroprogressive and dementia research network has expanded massively since it was founded a little over a decade ago. Having initially focused on studying Alzheimer’s dementia, for the past six years it has facilitated studies into other neuroprogessive illnesses such as Parkinson’s, Multiple Sclerosis, Huntington’s and Motor Neuron Disease too. From initial bases in Grampian, Greater Glasgow and Clyde, Lothian and Tayside, its studies now pull in participants from the whole of mainland Scotland. Much of the work it has contributed to has been groundbreaking.
When the coronavirus pandemic hit, though, a top priority for resource allocation was supporting Covid-related research studies. Workforce pressures and disruption to the traditional
delivery of clinical trials ended up having a knock-on impact on the rest of the portfolio. “That was difficult,” says Dr Tom Russ, NRS clinical research champion for dementia and neurodegenerative diseases, because “the bread and butter of our work is clinical trials”.
“We spend a lot of our time on that,” he says. “A lot of those are commercial trials run by drug companies, but we do a lot of academic drug trials too. With the advent of Covid it all stopped.”
With Scotland now free from most Covid restrictions, NRS researchers are gradually returning to business as usual, though Russ notes the legacy of Covid is likely to be felt for some time to come. From a practical point of view, for example, he says all trials now have to include an appendix in their protocols to outline what will happen if the country is forced back into a coronavirus-induced lockdown. From a personal point of view, it has forced him to rethink some of the ways he approaches his work – even if it may seem counterintuitive to do so.
“One frustration I experienced during lockdown was when our memory clinic had to switch to seeing people on the phone,” he says. “For a while I stopped doing the clinic because I felt I couldn’t justify to myself giving someone a dementia diagnosis over the telephone, but as time went on the benefits to having a diagnosis arguably began to outweigh the harms of having a telephone diagnosis. In some circumstances it’s better to know than to be left in limbo. We were doing what we could at the time. Like all parts of the NHS, we’ve had to adapt.
“We have managed to get a grant from UK Research and Innovation to speak to people who were given a diagnosis of dementia over the phone to find out what this was like for them and we are currently recruiting participants to this study.”
When the network first began studying neurodegenerative illnesses, its trials were very much focused around recruiting patients who lived within reach of Scotland’s main teaching hospitals. As they are based in Aberdeen, Dundee, Edinburgh and Glasgow, that meant that by definition the scope for attracting a wide pool of participants was limited. Russ, whose own research looks at whether there are geographical variations in dementia and whether those are caused by environmental factors, says the network now has the ability to recruit from the entire country, something that has the potential to improve the robustness of its findings.
“We have a new permission-to-contact system, which is GDPR [General Data Protection Regulation] compliant, that means patients give us permission to look at their medical records and contact them,” he explains. “That means we can be more targeted about linking people with trials that are happening. We work with all the relevant charities, which have great links to people, but we want to get to the position where everyone in Scotland with lived experience of these conditions is offered the opportunity to take part in research.”
Last year NRS began accepting participants onto the MND-SMART clinical drugs trial, a research project that is part-funded by the My Name’5 Doddie Foundation. The charity, whose mission is to create a world that is free from Motor Neuron Disease, was set up by former Scotland rugby player Doddie Weir after he revealed his MND diagnosis in 2017.
If research findings are going to impact everyone, we need to know what it’s like for people in their different contexts. We need to make sure that what we do is as representative as possible.
The trial, whose other funders include the Euan MacDonald Centre for MND Research at the University of Edinburgh and the charity MND Scotland, initially focused on recruiting participants who lived close to the Anne Rowling Regenerative Neurology Clinic at Edinburgh University and the Clinical Research Centre at Ninewells hospital in Dundee. Russ says it is now “happening at multiple sites across Scotland”.
“We have recruited our first participant from the islands, which has been an ambition of ours for a long time,” he says. “That’s partly about participation and allowing everyone the opportunity to take part and contribute in some way. Also, if research findings are going to impact everyone, we need to know what it’s like for people in their different contexts. We need to make sure that what we do is as representative as possible.”
MND-SMART is an innovative trial in that, while most studies aim to test the efficacy of one new drug at a time, it has been designed so that more than one treatment is being examined at any one time. It also has the ability to add or remove drugs as and when it might be deemed necessary. Two drugs are being tested in the first instance, with the study aiming to establish whether memantine – which is already used to improve the memory of people with Alzheimer’s – can slow the damage MND causes to neurons. It is also examining whether anxiety medication trazodone has an impact on the production of the faulty proteins that can cause neurons to die in MND patients.
“It’s called a platform trial and it’s looking at a number of different treatments,” Russ explains. “The plan is that as potential treatments become available we can quickly add another arm with those treatments.”
Numerous dementia trials are also back up to full speed, with observational studies, genetic studies, drug trials and brain-tissue banking all in the mix.
In the meantime, Russ says he will be watching closely to see what UK and Scottish regulators decide to do in relation to new Alzheimer’s drug aducanumab, which was trialled in hospitals across Scotland as part of a large-scale international study. Aducanumab, which has been hailed in some quarters as a wonder drug, was approved for medical use in the US in June – the first new Alzheimer’s medication to win regulatory backing in 20 years. Russ was involved in the trial of the drug that took place in Edinburgh and dealt with some of the participants who took part.
The fact that NRS was involved in such a wide-reaching study highlights some of the significant medical breakthroughs researchers in Scotland are involved in. There are hopes this can be extended even further in the wake of the coronavirus pandemic, with the scientific successes and ways of working from Covid-19 likely to be applied to other healthcare areas, dementia among them.
Improving translational capabilities in neurodegeneration and dementia is one of the healthcare missions set out in the recently published UK Government Life Sciences Vision. That publication reflects concerns that dementia and Alzheimer’s disease are the leading cause of death in the UK, with an economic cost of over £25bn per annum. With an ageing population, that is a significant issue that needs action. Filling the dementia knowledge gap, identifying new therapeutic opportunities, target validation, new diagnostic, prognostic, and treatment biomarkers, novel trial design and adaptive license strategies are some of the tactics set out to drive forward progress.
Alongside this, an ambitious new UK-wide vision – Saving and Improving Lives: The Future of UK Clinical Research Delivery – sets out work to build on the momentum, collaboration and adaptability evident throughout the pandemic to build back a more resilient, adaptable and innovative research system.
“Ultimately it is about improving the lives of patients all over the UK and around the world,” that report says. “This means embedding clinical research at the heart of patient care across the NHS, making participation as easy as possible and ensuring all health and care staff feel empowered to support research.”
For researchers like Russ, that can mean only one thing: the future is looking bright.
www.nrs.org.uk / @NHSResearchScot