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Meet the Researcher - Kate and Dee

21 October 2022

MND-SMART is the UK’s first platform trial in MND and is led by the Euan MacDonald Centre for MND Research at the University of Edinburgh. To mark the major milestone of recruiting it’s 400th participant, our Research Officer, Olivia Bird, caught up with two Research Nurses whose roles in the trial are supported by My Name’5 Doddie Foundation.

Until last year, Kate Barber was working 3 days a week as an MND Coordinator at Ipswich Hospital. When her team first considered becoming an MND-SMART site, they quickly realised it wouldn’t be possible to deliver it within those days. Funding from My Name’5 Doddie Foundation enabled her to work an extra day, as an MND Specialist Research Nurse, dedicating one day a week to the trial. The first participants in Ipswich were recruited in November 2021.

Kate has a background in neurology, initially performing diagnostic tests then moving into MND nursing. She has stayed in the field for so long because of the opportunities she has to make a difference. “If people feel nothing can be done, it’s about finding things that can be done and making a bad situation a bit better, so they don’t feel completely helpless.”

Dee McAleer, Neuroscience Research Nurse at Heath Hospital, Cardiff, spends approximately half of her time on MND-SMART. In her experience, she found that clinical trial opportunities were always available for people with other neurological diseases, but never MND. When the opportunity arose, she said it felt natural to her to work on MND-SMART, “For me, it’s full circle from being an MND Specialist Nurse. I used to tell patients it’s when not if an MND trial would come around. And now it’s here and I’m delivering it.”

Research nurses are integral to the delivery of clinical research. With their previous experiences, both Kate and Dee have extensive knowledge and understanding of the disease that allows them to expertly guide participants through the trial, according to the protocol. Dee said “Research nursing is coordinating everything to do with the trial, from setting it up, recruiting patients, carrying out assessments and collecting data. Importantly, we make sure patients are safe.” Kate added “A big part of the role is explaining to the patient, honestly, what the trial involves. We have a to be a reliable source of information for them.”

Speaking about her transition into research nursing, Dee said, “I’m still a nurse, but I get to be at the forefront of new developments in MND. I saw first-hand the frustrations that people with MND felt when they were diagnosed.” In the UK, fewer than 5% of people with MND have participated in MND clinical trials in the past 20 years. MND-SMART is designed in such a way that large numbers of people can take part at one time, and 17 sites across the UK are now recruiting. For many sites, including Ipswich and Cardiff, MND-SMART is the first MND clinical trial they have ever run. For Kate it's exciting to be able to offer this at a local district general in rural Suffolk, and for patients not to have to travel further afield to Cambridge or Norwich. Dee is working to deliver the only clinical trial on offer in Wales and described the site opening as emotional, “Being part of something that is a game-changer in MND makes this role even more special. People with MND should have options, and now they do.

Both Kate and Dee are inspired by the people with MND who are “driving the reform” that is happening in research, and they have seen a shift in the awareness of MND in recent years, largely driven by the “big personalities” who have it. Kate feels that more awareness has made a difference to the diagnostic process, “When I first started in neurodiagnostics, people didn’t talk about MND, and they couldn’t google their symptoms, so diagnosis came as a huge shock. Now, many people, when asked, say they were expecting the diagnosis. It’s helpful to ask that question because it means we know what conversation to have next.”

When asked what it meant to them to be able to deliver this trial for people with MND, Kate said the key for her was being able to offer something that is real. “I’ve seen the lengths people will go to in desperation. They have searched the internet and found what they think could be treatments or clinical trials for example in Thailand or Dubai, even suggested cashing in their ISAs to cover the travel costs. It’s awful how people try to take advantage of those at their most vulnerable. Now, I can tell them to come in for their normal appointment and that we can offer a real trial that is right here.”

Dee said some of her patients travel great distances to be part of the trial and that it’s their dedication that drives her to make sure she delivers it for them. Having worked around COVID restrictions to keep people on the trial, she believes there is no reason they can’t continue to deliver. “I remember the patients who missed out on the opportunity to take part in the trial, and I wish they were still here today to see that this is happening now.”

Kate and Dee are among the most passionate people in the MND community and we are grateful for their continued support and dedication. Without funding from our generous supporters, we would not be able to support them. Their work ensures that people with MND can enter clinical trials that were previously unavailable to them.

MND-SMART is funded by Euan MacDonald Centre for MND Research, My Name’5 Doddie Foundation and MND Scotland. Find out more about MND-SMART here.

Meet the Researcher -  Kate and Dee
Meet the Researcher - Kate and Dee

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