The Department of Clinical Neurosciences at Little France recently welcomed a news crew from CNN International to highlight a world‑leading partnership between the neurosurgery team and researchers at the University of Edinburgh.
Spearheaded by neurosurgeon Paul Brennan and Race Against Dementia Fellow Dr Claire Durrant, the programme involves keeping living human brain tissue – removed during routine neurosurgery – alive for study in the laboratory.
This pioneering research has enabled scientists to show, for the first time, how a toxic form of a protein linked to Alzheimer’s can attach to and damage the connections between brain cells.
The team hopes the discovery will help identify medications with the greatest potential to prevent the loss of synapses—the vital connections that allow messages to flow between brain cells and support healthy brain function.
Paul Brennan said: “During neurosurgery, there is always a small amount of healthy brain tissue that must be removed in order to reach, for example, a tumour and typically that tissue would be thrown away. Our partnership with Claire and her team means we can package up that healthy, living tissue and send it to the lab for testing.
“Even the tiniest piece “contains thousands of cells, and we can learn a great deal from it. Research of this type has been underway for some time, but this collaboration allows us to study living human brain tissue in a way that hasn’t routinely been possible before.”
The tissue is collected with the patient’s consent, in a process similar to organ donation. Aidan McAllister (28) chose to donate his healthy brain tissue during an operation to remove a tumour. He said: “My grandad passed away from Alzheimer’s a few years ago. We were really close – he lived just across the road and we saw each other every day. His dementia became so severe that he didn’t know who he was or who we were.
“It’s a really brutal disease. When Paul asked if I’d consider donating some of my brain tissue during surgery, I thought if it could help people like my grandad, then I wanted to do it.”
Dr Claire Durrant said: “We believe this research could accelerate the journey from lab findings to patient treatments, bringing us one step closer to a world free from the heartbreak of dementia.
“It was fantastic to be able to show the CNN team what we do and to highlight the vital, world-leading research taking place in Edinburgh.”
~ Warning not to ignore subtle stroke signs just because they are uncommon ~
A stroke survivor is warning others to watch out for unusual symptoms after joining a study funded by the British Heart Foundation.
Gordon Robb had a stroke involving a bleed in his brain, but his only symptom was finding that written words suddenly looked as if they were in a foreign language.
The 63-year-old is now taking the drug clopidogrel, as part of a clinical trial run by researchers at the University of Edinburgh. This study will examine if clopidogrel or aspirin, which are ‘antiplatelet’ drugs that reduce the risk of blood clotting, can prevent future strokes, heart attacks and premature deaths in people who have had a haemorrhagic stroke – a stroke caused by a bleed in the brain.
Gordon only discovered his stroke had happened after his cousin, whose husband had died from a stroke a few weeks earlier, insisted he go to hospital.
Having first thought his sudden inability to read was caused by tiredness, he now describes himself as an ‘extremely lucky man’. He had none of the more commonly known symptoms of a stroke, such as problems with his face, arm, speech, eyes or balance.
Difficulty recognising written words on its own, without any other symptoms, affects fewer than one per cent of people at the time of their stroke, say researchers.
A few months on, Gordon’s symptoms are improving, although it now takes him half an hour to read a chapter instead of his previous 10 minutes, and more recently he has noticed he occasionally can’t find the right word during a conversation.
Gordon said: “I am incredibly lucky, and quite honestly felt like a fraud in the stroke ward because I was no different to how I am normally, except that I suddenly could not read words.
“A group of student doctors in neurology who were brought to see me even said they would have struggled to diagnose that I had had a stroke.
“I knew some of the classic signs of a stroke like facial weakness, being unable to raise my arms or speech issues, but had none of these.
“It just shows the importance of paying attention to unusual symptoms, even if they aren’t ones you have heard of before. If I hadn’t gone to the hospital, and quickly received treatment, I could have been walking around with a ticking time-bomb in my head.”
The stroke survivor, from Bonnyrigg in Midlothian, had only been to hospital once in his life previously. A keen cyclist and runner, who had climbed to base camp at Mount Everest two years ago, he felt in perfect health.
So when, on September 27 last year, he checked his emails and could not read them, he put it down to tiredness.
Gordon, the former vice-president of a biotech company, said: “I was in the garden, went in to have a cup of tea, listen to some music and check my emails on my phone – and it was like they were in a foreign language.
“I could see them clearly, and see who they were from, but the words meant nothing to me.
“I just assumed I was tired because I had been up late the night before. When friends were then messaging me about the Ryder Cup that evening and I couldn’t see the messages, I just gave myself an early night.”
The following evening, when he was unable to read the instructions on a cash machine to withdraw money, he resolved to go to see his GP the next day.
However, when he told his cousin – whose husband had died from a sudden stroke just three weeks earlier – she drove straight to his house and insisted on taking him to A&E. There, doctors told him he had had a haemorrhagic stroke.
Approximately 15 per cent of strokes are haemorrhagic. The majority of strokes are ischaemic strokes, caused by a blocked artery.
While in hospital, Gordon signed up to a study being led by Professor Rustam Al-Shahi Salman at the University of Edinburgh, which is called ASPIRING (Antiplatelet Secondary Prevention International Randomised study after INtracerebral haemorrhaGe).
The international study is recruiting people who have had a stroke due to bleeding in the brain, also known as a haemorrhagic stroke. Study participants in the UK will be given ‘antiplatelet’ medicines like clopidogrel or aspirin, which reduce the chances of a stroke or heart attack by preventing cells in the bloodstream, called platelets, from sticking together and forming a blood clot.
Antiplatelet medicines are not routinely prescribed for people who have had a haemorrhagic stroke, because of safety concerns that they may increase the risk of bleeding. But a small study called RESTART, led by the University of Edinburgh and also funded by the British Heart Foundation, found aspirin and clopidogrel are safe after a haemorrhagic stroke.
In this new larger study, researchers in the UK now aim to understand if clopidogrel or aspirin can reduce the likelihood of having future strokes, heart attacks and other clotting and bleeding problems in people who have survived a haemorrhagic stroke.
Major clotting or bleeding problems occur in around one in 10 haemorrhagic stroke survivors every year.
Professor Salman said: “It has been hard to overcome the instinctive fear that if people have had a haemorrhagic stroke, taking aspirin or a drug like it might cause more bleeding. So we were very relieved when our research showed such drugs to be safe after a haemorrhagic stroke.
“The ASPIRING study will gather further evidence to establish if aspirin and clopidogrel can help lower the risk of future strokes and heart attacks, and potentially save the lives of people like Gordon who have had a haemorrhagic stroke.
“I believe there is a huge amount more to be done to help these people, whose lives have been turned upside down and who may be concerned about the future.”
Gordon is one of more than 4,000 people worldwide set to join the study, which is also funded by the Dutch Heart Foundation, the Canadian Institutes of Health Research, the Research Foundation – Flanders and the Medical Research Future Fund in Australia.
The study was endorsed by the Global Cardiovascular Research Funders Forum (GCRFF) multinational clinical trials initiative.
Gordon said: “Being involved in this trial provides some reassurance, that this drug may reduce my risk of another stroke.
“But it is also great to know that being involved could help improve treatment for people like me in the future, and relieve the pressure on the health system.
“I feel extremely lucky that I did not have more long-term effects from my stroke, and that I have had the chance to try to help improve treatments.”
Dr Sonya Babu-Narayan, the British Heart Foundation’s clinical director, said: “Facial weakness, arm or leg weakness and speech problems are well-known signs you or your loved one may be having a stroke, but there are some lesser-known symptoms like being unable to recognise the written word.
“If you have a symptom that you feel is not right, however strange or unusual, it is really important to seek help. Every minute matters if you may be having a stroke or other medical emergency.
“We know stroke survivors often fear having another stroke and how disabling this could be. That is why the BHF is funding clinical trials like ASPIRING, which will test whether prescribing antiplatelet drugs could protect more people.”
The ASPIRING study is recruiting people from England, Wales and Scotland who have had a haemorrhagic stroke.
Volunteers can check their eligibility, depending on the hospital where they received treatment, and express interest by visiting www.ASPIRING.ed.ac.uk
Brain tumour patients and family members who have lost loved ones gathered at the Scottish Brain Tumour Research Centre of Excellence, a game-changing collaboration with Beatson Cancer Charity, in Edinburgh to learn more about the world-class research taking place there and call on the Scottish Government to increase investment in and widen access to clinical trials.
This urgent call comes ahead of the Scottish Parliament Cross Party Group (CPG) on Brain Tumours meeting today (Tuesday 25 November), convened by Brain Tumour Research. Attendees, including Convener Beatrice Wishart MSP and MSP Finlay Carson, will hear about the latest clinical innovations in the field, and about inequitable access to genomic testing.
Whole genome sequencing (WGS) of brain tumour tissue reveals powerful information about the underlying biology driving tumour growth and helps to inform what drugs could be used to target specific cancer-causing pathways. This information unlocks access to clinical trials based on cancer biology rather than location in the body. Without it, the pool of trials that patients can be part of shrinks.
In Scotland, WGS is not routinely offered through the NHS and access is largely limited to research studies. The lack of routine testing means patients are not accessing treatment options based on the biology of their individual tumour when needed. It also means that patients won’t be eligible for more personalised treatments such as immunotherapy that may become available in the coming years.
Among the families calling for more action is Nadia Majid, from Airdrie, who lost her four-year-old son Rayhan to a brain tumour. On 13 December 2017, an MRI scan revealed that little Rayhan had a high-grade medulloblastoma brain tumour.
Two days later, Rayhan underwent a 10-hour operation. Surgeons removed most of the tumour, but not all, as it was touching his brainstem. Despite three further surgeries and six weeks of radiotherapy, Rayhan tragically died just four months after diagnosis, shortly after starting chemotherapy.
“You think that with medicine today, there would be effective treatments and even a cure,” Nadia said. “But shockingly, brain tumours kill more children and adults under the age of 40 than any other cancer.
“Added to this, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002. It shouldn’t be left to charities to fund research.
“We can’t allow Scottish families to be left behind in the search for more effective, kinder treatments and ultimately a cure.”
Brain Tumour Research Patron Theo Burrell will join supporters at the CPG this week. Theo is supporting our active campaigning on the need for greater access to, and patient-led uptake in clinical trials.
Theo Burrell, Brain Tumour Research Patron and glioblastoma patient, said: “Being diagnosed with a brain tumour is devastating enough, without finding out that patients in Scotland are being left behind in the hunt for new treatments due to a lack of routine testing.
“I am working with Brain Tumour Research – the Secretariat of the Brain Tumours Cross Party Group in the Scottish Parliament – to make it clear to the Scottish Government that 100% of brain tumour patients should be offered genome sequencing. The technology is there – let’s use it to stop this injustice.”
The Scottish Government is teaming up with MND Scotland to fund research to investigate potential causes of and therapies for motor neurone disease (MND).
Each partner is contributing £125,000 to provide the opportunity for a clinical professional to undertake a PhD to both enhance MND research and MND clinical capacity in NHS Scotland. The three-year Clinical Academic Fellowship will start in 2024.
According to MND Scotland, in the UK, there is a 1 in 300 lifetime risk of getting MND and there is currently no cure or effective disease modifying treatment available. Average life expectancy following diagnosis is just 18 months.
Deputy First Minister Shona Robison announced the funding in Paris where she welcomed charity cyclists who had travelled from Edinburgh to raise funds for the MND charity My Name’5 Doddie Foundation.
Ms Robison said: “MND is a devastating condition, and we are committed to ensuring that all people living with MND in Scotland are able to access the best possible care and support.
“MND is incredibly distressing for the person with the condition and their family. The research funding in collaboration with MND Scotland will allow vital work to study the progression of the condition and help inform the development of future treatments.”
Dr Jane Haley, Director of Research at MND Scotland, said: “We are proud of our ongoing partnership with the Scottish Government. This is our third joint funded fellowship and will further build MND research capacity within the NHS in Scotland.
“MND is a brutal disease that affects too many lives. With this joint funding, we are taking a further step towards understanding the causes of MND and the search for effective treatments.
“We look forward to future collaborations with the Scottish Government, including ensuring that Scotland is equipped to roll out any emerging treatments for MND which may arise from the clinical trials currently underway.”
A new clinical trial researching treatment for patients with sight loss as a result of diabetes has shown a type of laser treatment to be both cost effective and non-invasive, offering the best option for patients and healthcare providers.
There are currently several treatment options offered to people with Diabetic Macular Oedema (DMO), including two types of laser treatment and eye injections. DMO is the most common sight-threatening complication of diabetes, affecting over 27 million adults. This new research provides much-needed evidence to enable patients and healthcare professionals to be better informed on treatment options.
DMO happens when blood vessels in the retina at the back of the eye leak, causing fluid build-up at the macula, which provides central vision. The leakage occurs when high blood sugar levels damage blood vessels.
The severity of DMO is most often determined by measuring the thickness of the macula, which in-turn will determine the treatment offered. Patients with more severe DMO (with thickness of 400 microns or more) are treated with injections into the eye of drugs, known as anti-VEGFs.
Patients with mild DMO (with thickness of less than 400 microns) can be treated with macular lase, which can be standard threshold laser or subthreshold micropulse laser. The former produces a burn or scar on the retina. The latter, which is a more recent technology, works without leaving a burn or scar or any type of visible change or mark on the retina.
The research, published in Ophthalmology, found that subthreshold micropulse laser, which does not create a burn on the retina, was effective in maintaining a patient’s vision. This also requires much less frequent visits to the clinic and is much more cost effective than treatment via eye injections, with eye injections costing almost ten times more than laser treatments.
Professor Noemi Lois, Clinical Professor of Ophthalmology at Queens University and Honorary Consultant Vitreoretinal Surgeon at the Belfast Health and Social Care Trust and lead author on the study, explains: “The absence of a scar or burn following subthreshold micropulse laser led to some healthcare professionals to doubt its effectiveness compared to the standard threshold laser.
“However, our research addressed this by demonstrating that subthreshold micropulse laser is as good as standard threshold laser for helping people’s vision, reducing macula thickness, allowing people to meet driving standards, and maintaining their quality of life, both in general terms and for vision in particular.”
The research team set out to compare both types of available laser treatment through a large randomised clinical trial, known as DIAMONDS (DIAbetic Macular Oedema aNd Diode Subthreshold micropulse laser SML). They recruited 266 patients across 16 NHS hospitals around the UK, with half receiving standard threshold laser and the other half receiving subthreshold micropulse laser. Unique to this trial, patients were involved in selecting the outcomes, including how driving standards would be met following treatment. At the end of the two-year trial, DIAMONDS found both laser treatments to offer equivalent benefits.
The total cost of the care of patients enrolled in the trial (including the laser treatment and any other treatments required as well as the costs of the follow-up visits) over two years was similar for both patient’s groups. Over the two-year period, the cost per patient was just under £900 (£897.83) for patients in the subthreshold micropulse laser arm of the trial compared to £1125.66 for those in the standard laser arm.
Professor Lois adds: “Some ophthalmologists advise patients with milder forms of DMO to have injections of anti-VEGFs, rather than laser, despite laser being less invasive and requiring less visits to the clinic.
“Laser treatment costs significantly less than eye-injections of anti-VEGFs. With an average of ten injections required over two years, the total cost of eye injections per patient amounts to approximately £8,500 for the drug alone. This is almost ten times the cost of subthreshold micopulse laser without taking into account additional costings such as staff time.
“Until we published these findings, there was no robust evidence comparing these types of laser treatments. A lack of information led some healthcare professionals to favour standard laser over subthreshold micropulse laser. We now have robust evidence to show that both laser treatments are not only effective in clearing the fluid from the retina and maintaining vision for at least two years, but both are also cost-effective.”
“Armed with this knowledge, it’s likely that patients will opt for micropulse subthreshold laser, which doesn’t burn the retina and is comparable to standard laser. Whilst we didn’t directly compare laser treatments to treatment via eye injections of anti-VEGFs, hopefully we have shown that laser is an effective treatment, while remaining much less invasive to the patient and much less costly to the NHS.”
The research was funded by the Health Technology Assessment (HTA) of the National Institute for Health and Care Research (NIHR).
