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“Yes I have Parkinson’s, but I’m no geriatric”

Gaynor Edwards, founder of Spotlight YOPD, on her mission to change perceptions and awareness of the condition – and why the stigma has to go.

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When Michael J Fox was diagnosed with Parkinson’s Disease aged only 29, the world was shocked to see a high-profile celebrity struck down with such a cruel condition.

At the time, few probably realised that Parkinson’s could affect someone so young. Again, when Muhammad Ali revealed he had the condition, diagnosed aged 42, there was widespread anguish at his plight at being diagnosed at such a young age.

But the harsh reality is that, while these two cases attracted huge attention, this is happening to people around the world every day. Figures from Parkinson’s UK suggest a rising population with the condition  – currently standing at 145,000, with 1,757 people aged under 50 living with the disease.

These are known as Young Onset Parkinson’s Disease (YOPD) cases. Although they officially represent 1.2 per cent of cases, misdiagnosis is common due to the persisting misbelief that people are simply ‘too young’ to have the condition. While symptoms are broadly the same as with Parkinson’s, around 30 per cent of people with Parkinson’s never present a tremor – viewed by many as a definitive sign.

Gaynor Edwards was 42 when she  was diagnosed. The charismatic owner of a PR and marketing firm in Tunbridge Wells went to her GP after two incidents which made her think she should seek medical attention – but Parkinson’s was still not immediately seriously considered because of her age.

“I had a frozen left shoulder, then things started to happen which I thought ‘that’s not right’. I drove an automatic car, so never had to worry about operating a gear stick, but on one occasion a friend parked my car for me and I couldn’t get the handbrake off,” she recalls.

“Then I was in a work meeting with a local councillor, which is something I’ve done many times and doesn’t faze me. All of a sudden my left hand started shaking like the clappers. I wasn’t nervous, certainly not to make me shake like that anyway, I just didn’t know what was going on. But of course in young onset, people don’t always display the tremor that is so associated with Parkinson’s, it is more commonly sparked by anxiety.

“I went to my GP, who was just about to retire and had seen it all before. While he did raise the possibility of Parkinson’s, he said my reflexes were too good for it to be Parkinson’s. I then went to a neurologist, who also said my reflexes were too good for it to be Parkinson’s. The nurses who were there were saying ‘It won’t be Parkinson’s, you’re far too young’ but nine months later, following a DAT brain scan, I was given the diagnosis. Needless to say, the bottom fell out of my world.”

Shocked by the lack of specific support given to young people with Parkinson’s, with no counselling or real support offered, just a “huge unfriendly folder of information targeted at older people”.

Gaynor was further troubled by the response from some quarters when she announced her diagnosis via her company’s Christmas newsletter.

“Some of my clients were great, but others dropped me like a stone. I presume they no longer thought I could do a great job for them. But the truth was I still had a living to make, I wasn’t about to drop dead – Parkinson’s doesn’t really impact on life expectancy – I wasn’t about to lose my mind, and of course I was still able back then to continue working. I was left questioning whether I should have told people or should have kept my diagnosis to myself. And that is not right,” she says.

Channelling her marketing and publicity expertise and frustration at the situation towards bringing about change, Gaynor created Spotlight YOPD, a UK-based charity with a global reach specifically for people with YOPD, to offer them the support and information they need to have confidence in themselves and their futures and their ‘Parkie Power’.

Since officially launching in January 2016, it has helped to support people of all ages, genders and professions. Among those working with Gaynor is 24-yearold Jordan Webb, who holds a Masters degree in psychology and is currently the youngest known case of YOPD in the UK. Another is Vicki Dillon, who took part in the recent GDNF trial and was featured in the BBC TV documentary on the pioneering brain treatment that aims to restore damaged neurons in Parkinson’s cases.

“One thing we all want people to understand is that we don’t have Parkinson’s, we have YOPD, and that’s very important. We don’t want to be seen as having this ‘elderly condition’ as we have to live with this for the next 30, 40, 50 years or more. The stigma needs to change, and not being seen to have an ‘old people’s disease’ will help with that. This is a hidden and sidelined community, there are no organisations really looking after us, so many feel abandoned,” says Gaynor.

“People are seen by geriatricians who don’t always necessarily understand YOPD, so aren’t always able to give the best advice. Even within the medical profession, as I found myself, you find Parkinson’s is written off as a possibility as the person seems too young to have it. But they could have YOPD, as that affects people of any age – the youngest diagnosis we know of is a two-year old in the States, while in the UK one of my YOPD friends was diagnosed at just eight. This is classed as juvenile onset so there is clearly no such thing as being too young. We need genetic testing on diagnosis to help us learn more about this.”

Gaynor believes empowering people with information – which includes people with YOPD, clinicians, researchers and the public in general – can help to bring about change. “I think when you are diagnosed with Parkinson’s, or more accurately with YOPD, you are so floored by it that it’s easy to just be accepting of your lot.

But we want to help people to have the confidence to ask for more, to say ‘this isn’t good enough’, to do their own research and find out where the best people and support are available, even if that means they have to travel beyond their local area.

“We need to say to people that no-one is going to care and understand about you and your situation more than you yourself, so get out there and find what is best for you. Check everything, if it doesn’t feel right to you then it may well not be,” she advises.

“But I think the way YOPD is viewed and the awareness there is among people in general is pitiful. I think people will presume that the same level of support is offered to us as it is to people with cancer or other conditions, but it’s sadly lacking. Counselling on diagnosis should be automatic, for both those diagnosed and their family. Depression is a symptom as well as a reaction to the diagnosis. Parkinson’s is caused by a lack of dopamine – one of the brain’s happy chemicals. On that basis, depression should not be too much of a surprising symptom.

“Suicide attempts are common in people with YOPD; mental health is a big challenge here. When you hear those words ‘You have Parkinson’s’ you cannot imagine the effect that has on people. There is no counselling being offered to help you cope. I went to my own counsellor, but I think it should be routine that there is someone there to help you process and better understand the reality of what you have to live with.

“There is no consistent diet advice, no financial advice, just an instruction to inform the DVLA, who will reward you with a three-year driving licence, and lots about palliative care – needless to say, that’s not what someone diagnosed with YOPD wants to read. Imagine you’re 26, you’ve got kids, you’ve got a mortgage to pay – you need to get your head around what has happened and you need help with that. I think many people expect we get support as standard, but we don’t, we don’t even get free prescriptions.”  Gaynor also passionately believes YOPD should be given its own NICE guidelines.

“In 2017, they put out some information which addressed pregnancy and Parkinson’s, which must have been directed at people with YOPD barring some medical miracle.

“But while they acknowledge juvenile onset, YOPD appears to be sidelined, despite being recognised as a rare disease in its own right.”

As part of her mission to secure these badly needed changes, Gaynor is a vocal advocate, also working with fellow charity The Cure Parkinson’s Trust. She has attended major events including the fifth World Parkinson’s Congress – held every three years – in Kyoto in June, as well as the European Neuro Convention at the NEC in Birmingham, along with Jordan and Vicki.

“Events are often a great way of meeting and engaging with people, and I think the World Parkinson’s Congress is fantastic. There are clinicians and neurologists there, alongside patients. It’s very rare in a neuro convention that patients are so central.

“Not everyone likes this analogy but we are the talking lab rats – why would researchers not want to hear our perspective? The humility and humour of the patients involved is just incredible, and that is helping to bring about change in itself,” she says.

“At the NEC, as with many events there is a lot of white and corporate blue, but we rocked up with YOPD in big gold letters, theatre-style, against a red satin curtain backdrop.

“Vicky and I were dressed in our 1950s dresses with big underskirts and YOPD slogan T-shirts. We want people to notice us and acknowledge us, come and talk to us and learn about YOPD and the realities of it. We sat on the floor, including Jordan who is 6’2.

“People would come over to chat to us but wouldn’t want to sit down, the most common excuse being because of their knees – but when we said we all had Parkinson’s, they joined us.

“We are committed to changing things for the benefit of people everywhere. We live with it and know the many changes that need to be made, but the main thing that we want people to take from Spotlight is that they’re not alone.”

Spotlight YOPD launched its ‘DON’T PANIC’ card at the recent NEC event. Healthcare professionals are invited to get in touch to request this resource, which can be used to offer support to their YOPD patients.

See spotlightYOPD.org for details.

Parkinson’s is a key area of focus in NR Times. We cover the latest research breakthroughs, insight and personal stories related to this and other neurological conditions. Our readers include both professionals and families seeking the inside track on progress in tackling and better managing these conditions. Get your copy, filled with exclusive print-first content, every quarter for just £24.99 per year.

 

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Case management

BABICM – rising to the post-pandemic challenges and opportunities

Vicki Gilman, chair of BABICM, shares her priorities for the organisation as case management looks to a new future

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Vicki Gilman has taken up the post of chair of the British Association of Brain Injury & Complex Case Management (BABICM) at a hugely important time as case management moves into a new post-pandemic chapter, following an unprecedented period where case managers rose to the diverse challenges presented by COVID-19 and helped to create a new future. 

A future where technology and virtual communication will feature like never before; where the need to work in collaboration has never been greater; and where the creation of the Institute of Registered Case Managers (IRCM) will enable registration of case managers for the first time. 

While undoubtedly an exciting time with huge potential for case management, the challenges – and opportunities – for BABICM, as it too builds for the future on the foundations of its 25 years of expertise, are plenty. 

“Becoming chair was something that was first suggested to me about three years ago, and at that time I had no idea, as no-one did, that we would all see such huge change in our lives,” Vicki tells NR Times. 

“There were several things in the back of my mind then that I thought might be key themes – some of them remain the same despite what has happened since, although by no means all of them. I think a lot has been learned over the past 18 months that I don’t think we will go back from. So, in many ways, this marks a fresh start.

“I’m immensely proud of how the whole case management sector responded, how we stepped up to the challenges and with such speed. Case managers are used to looking at complex scenarios in unique circumstances and working to find ways forward within the context of each case.

“The pandemic served up additional challenges which prompted a lot of innovation and different and new thinking, with plenty of opportunities. 

“As ever in case management we have taken the learning from everything we do, but this time case managers – along with everyone else – were juggling the unique changes in their own lives such as homeschooling children and supporting friends, neighbours and family members whilst continuing with their highly complex and confidential work to support each individual case by case.”

Vicki, managing director of Social Return Case Management, takes over the BABICM chair from Angela Kerr, who is now chair of the IRCM. BABICM will continue to play a central role in the ongoing development of the body, as a founding member, which hopes to secure accreditation from the Professional Standards Authority (PSA) in the near future.  

An experienced case manager, health entrepreneur and clinical specialist neurophysiotherapist, Vicki spent six years on the BABICM Council, returning last year for a preparatory period before taking the chair.

Building on her experience of specialist rehabilitation, expert witness work and case management and being part of BABICM, while taking inspiration from the events of the past 18 months and impending future changes, Vicki has identified a number of priorities to address during her time at the helm. 

  • Equity and belonging 

“I have starting educating myself to a greater degree and have had a lot of conversations with people who know a lot more than me about equality, diversity and inclusion,” says Vicki.

“This is actually quite challenging and I don’t personally know enough yet. I do know that both the organisation and I need to do more. As I go on my journey, it is my aim to find allies and to bring other people into learning more with me. Together we can make BABICM better place.”

“It follows that our increasing membership means we have greater diversity, and it is not enough to say ‘We don’t discriminate’.”

Vicki says equity and belonging must be sentiments which underpin BABICM. “It is a really important to ensure a greater understanding is threaded through the work of BABICM,” she says. 

“For me, equity means more than equality, and we want to help people feel they belong here. It’s not enough just to say these words.” 

  • Collaboration

“We need to strengthen links we already have and collaborate with other organisations who are important to our members through the work they do,” says Vicki. 

“Angela has done an amazing job to strengthen and move the organisation forward, of identifying organisations and allies we should be working in collaboration with and creating links with people at the right level – organisations such as the CQC, Court of Protection, UKABIF, some education establishments, to name but a few. 

“There are lots of ways we can deepen and develop on that, and as we come out of the pandemic there will be more opportunities. Zoom calls are really time-saving and effective, but hopefully we will also have the option to do things in person again going forward.” 

  • The future as a profession with registration

One of the most significant changes in case management, the creation of the IRCM, is set to professionalise and regulate case managers in a sector-changing move. 

“We will continue to support the goals and development of the IRCM, it is by no means done and we need to continue the work here,” says Vicki. 

“We are fully supportive of the direction of travel and fully endorse registration for case managers. This is a way for the public to be protected specifically in the realm of case management and for case managers to be able to demonstrate that.”

  • Training and learning

“I want to continue the development of the high-quality learning and training opportunities available to our membership, but also to those outside,” she says. 

“We aim to keep it very relevant to current clinical and professional needs, keeping ahead of the curve and making sure that what we are offering is of the highest quality. As professionals working with complex cases, I can only see that need developing further. 

“In the last few years BABICM has really showed its strength as the leading provider of education and training for case managers working with complex cases. The feedback we’ve received for our courses has been tremendous and that has continued even during the pandemic. Training will remain key and grow in importance.”

  • Research 

“I’m very keen to increase the involvement of BABICM and its membership in research around case management related issues. I want us to lead the way in with research into evidence-based practice for people with complex needs,” says Vicki. 

BABICM has recently been involved in a number of research projects, working alongside the University of Plymouth. In yet to be published findings, the team has studied how case managers and clients alike have adapted to the pandemic. 

“There is research out there which supports the work of case management, but we are taking greater responsibility to add to that evidence base and that is something I foresee will increase and needs our members to be involved in,” she says.

“This will of course add even further to our library of resources to support the work of case managers.” 

  • Providing useful resources to members 

“I see us to stepping up in provision of information to assist across our membership within legal, clinical and professional aspects of their work,” says Vicki.

“Those involved in the case management of complexity and those working with case managers need resources that are tailored to their needs. 

“We already do this in many ways via our website with recorded webinar content, upcoming training and development events, publishing our standards and competencies and signposting and links to other sources of support regular bulletins. Our website is proving a very useful resource library which is seeing growing traffic, as it assists our members and others. 

“As our members apply for registration with the IRCM there will be an even greater requirement to demonstrate what case managers are doing and whether they are meeting the standards, so we need to continue to build relevant resources to support this need.”

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Interviews

Could this be the long-awaited breakthrough in GBM?

Through electric field therapy, QV Bioelectronics are looking to achieve better clinical outcomes and improved quality of life for glioblastoma patients

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While breakthroughs in cancer treatment over the past 40 years have been truly life-changing, with recovery prospects and life expectancy in many common cancers revolutionised, that sadly is not true with regard to glioblastoma (GBM). 

A particularly aggressive form of brain tumour, the outlook for GBM patients continues to be bleak, with the average survival time being just 12 to 18 months despite an intensive treatment regime comprising surgery, chemotherapy and radiotherapy. Only a quarter of people diagnosed with GBM survive for longer than this, with just five per cent still alive five years later. 

In a world where cancer treatments continue to be developed successfully, the overall outlook for most cancer patients is improving accordingly – 76 per cent of breast cancer patients now survive for at least ten years following diagnosis, a rate which has doubled in the last four decades. Sadly, this has not been the case for GBM patients.

And it is that lack of progress in GBM treatment, which has inspired the creation of what just could be the long-awaited breakthrough.

Through the work of QV Bioelectronics, the potential of electric field therapy in helping GBM patients see better clinical outcomes and experience improved quality of life is being realised, with the combination of the biomedical engineering and neurosurgery expertise of its founders, helping to give hope for the future in an area where advances are desperately needed. 

“It is too long since we have had any change in how GBM is treated. The needle has moved massively in cancer care, but not in GBM. Our ambition is to increase the number of ‘long term survivors’ significantly – the ones who survive for several years, who currently only make up a very small percentage of all GBM patients,” says Qasim Akhtar, head of business development at QV Bioelectronics. 

And with the development of its implantable GRACE device, which would be used alongside the current standard of care, the business is already on its way to delivering on its ambitions. With a prototype device already made, and ongoing investment being raised to support its progress – with the last £735,000 seed funding round significantly oversubscribed – QV Bioelectronics is striving to be available on the market in late 2028. 

Further research and development is ongoing, with pilot studies moving into large animals next year, as QV Bioelectronics continues to move closer to its life-changing technology becoming reality. 

The business, established in 2018, was inspired by the experience of Dr Richard Fu, a neurosurgeon who was determined to develop better treatment solutions for GBM patients. He was aware of the recently developed approach to deliver electric field therapy through an externally worn scalp cap, which had already shown promise in clinical trials, but believed that an implanted approach to deliver electric field therapy continuously and more precisely could have the potential to dramatically improve patient outcomes whilst also improving quality of life.

“Too often, patients were being told they might have a year left. Some of whom were in the prime of their lives, but there was nothing the doctors could do. Patients, and doctors too, were crying out for improved treatments,” says Qasim. 

While carrying out research at the University of Manchester, Dr Fu met Dr Christopher Bullock, a biomedical engineer with expertise in medical device design, biomaterials and bioelectronics, who was completing a PhD in regenerative medicine. 

“They became fast friends in the lab and the idea took off from there. Chris had huge complementary experience and knowledge in the use of advanced materials in bioelectronics, and the concept drew upon Chris and Richard’s joint expertise,” says Qasim. 

“They believed that they could create something highly innovative – an implanted device made from advanced materials which could deliver electric field therapy 24/7 and had the potential to improve survival rates whilst not affecting a patient’s quality of life. This would represent a huge breakthrough.” 

And from that concept has come the development of GRACE. After winning the Eli and Britt Harari Award from the University of Manchester in 2018, established to develop commercially-viable ideas using the wonder material graphene, Dr Bullock and Dr Fu used the £50,000 award to begin the process of bringing their idea to life. 

From there, QV Bioelectronics – which rebranded from Honeycomb Biotechnology – has continued to develop, with a now six-strong team, of which Qasim was the first employee, and expansion into the UK’s biggest bioscience park, Alderley Park in Cheshire, helping to propel it forward. Accelerator programmes at Alderley Park, RebelBio (at Imperial College London) and Creative Destruction Lab (at Oxford) have also helped to lay the foundations for its future. 

Significant investment has already been raised, but much more will be needed to ensure QV Bioelectronics is able to achieve its ambitions and make its technology available to medical teams and patients. 

“We know we’re going to have to raise a lot of investment but we’ve had great support for what we have done so far, and from investors buying into our plans. We need to go through safety clinical trials and major international trials before we can look at securing market approval, the regulations for which are very tight, as they should be,” says Qasim. 

“When we go into the studies in large animals in about a year’s time, we hope to show the progress we’ve made with some exciting safety data, and we can move forward from there.” 

“It’s amazing to think how far we have come already. When I first joined in 2019, we were working on ideas in co-working spaces and coffee shops, but we are moving forward strongly. There is a huge amount of work to do, but we are all inspired by the end result.”

“Our big ambition is for this to be something that a surgeon recommends whenever a GBM patient has surgery, and for this decision not to be limited by price. In the longer-term, we can also look at whether we can expand what we do into other neuro-oncologies, and whether we can integrate detection systems – but for now, the entire focus is on GBM, an area where change is so badly needed.”

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Brain injury

Drake Foundation: ‘Research can protect players and enable change’

CEO Lauren Pulling tells NR Times of the Foundation’s commitment to protecting player welfare through better understanding the impact of injury

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A professional footballer balances a football on his head marking the release of a study into footballers risk of dementia

As one of the first organisations to recognise and react to the urgent need to address head injury in sport, The Drake Foundation has become a central player in the fast-developing debate over how to best protect players at all levels from the devastating later-life impact of neurodegenerative disease. 

Established by philanthropist James Drake in 2014, in the wake of an injury to then-Tottenham Hotspur goalkeeper Hugo Lloris during which he was knocked unconscious during a match but was allowed to carry in playing, the organisation is committed to delivering the research which will hold the key to making change. 

The Foundation has been behind some of the most significant research projects to date in uncovering the impact of head injury in sport, including the Drake Rugby Biomarker Study, the first of its kind to make use of advanced neuroimaging.  

The landmark BRAIN and HEADING projects – which investigate the impact of concussion in former players aged 50 and over in rugby and football respectively – are both helping to shed new light on links to neurodegenerative disease. 

Over £2million has already been invested in research by the Foundation, which describes itself as being at the intersection between sports, science and society, to not only improve sports player welfare but also to advance knowledge and understanding of the brain and brain diseases in sport and across society as a whole. 

Further pioneering projects are now underway, including one with retired rugby players from the pre-professional era, the findings of which could help shape the adaptations needed to properly protect players in the game in its current form. 

And the need for such research is vital in helping to understand what happens in players’ brains so action can be taken to protect current and future players, says Lauren Pulling, CEO of The Drake Foundation. 

“Over the last couple of years we’ve really seen the conversation on this topic shift and more people are now invested in it, it’s not just a concern for retired players who were playing decades ago, it’s a very real concern for everyone whether they’re a youth player now, whether they’ve recently retired from elite sport or whether they’re an amateur player,” she tells NR Times. 

“It’s now become a conversation everyone is involved in so it’s really critical we have more research and ongoing research in this area to really pinpoint exactly what is happening in the brain, but alongside that so that sports governing bodies can take real action as well. 

“While it’s going to take a while to build the full picture of what’s happening in the brain, we need to be making significant changes to pre-emptively and universally reduce players’ exposure to head impacts.

“When you know more what the actual cause is you can target that, which will help governing bodies with any protocol changes to make sport safer.”

Already, the Foundation’s research has produced some worrying findings, with its Rugby Biomarker Study revealing that almost a quarter – 23 per cent – of current rugby players sampled had abnormalities in white matter of vasculature of their brain. 

While some moves are being made to tackle the issue of player safety, based on the research that exists to date – including the limit on full-contact training in rugby and restriction on high-force heading in football training – the Foundation is keen to see more action taken, backed by enforceable laws from governing bodies. 

“I think for players to feel safe and youth players going into the game to feel safe, there need to be universal enforced law changes that minimise their cumulative exposure to head impacts, not just in the game but in training as well,” says Lauren. 

“We want to see more from sports governing bodies. We’re really pleased to see recent changes to guidelines like the limit on full contact training in rugby and guidance to reduce heading in football in training in particular – but we’d question whether it could go even further.

“I think we need to stop being tentative and go for enforced law changes rather than guidance.”

The need for such action is becoming ever-more apparent, with players of all levels speaking out about their concerns around participation. 

“We did some market research at the beginning of this year with amateur players and the parents of youth players in both football and rugby, the results of that were really concerning,” says Lauren. 

“Two thirds of parents and amateur rugby players were concerned about the long-term impact of the sport on their brain health around half of parents and players in football wanted to see a reduction in heading. 

“Seeing that people are that concerned, and that’s what the attitude is not just in elite sport but in the amateur grassroots game, that tell us action needs to be taken before not just more players are affected, but also for the future of the game. 

“If people are dropping out then what does the future of sport look like? So I think we need to make some big changes to protect the players and the game so we don’t see another generation of this happening.”

In addition to its ongoing research, the Foundation also sees collaboration as being key to change being made around head injury in sport. Its symposium meeting brings together researchers, sports governing bodies, medical experts and other stakeholders in the debate to continue to drive the issue forward. 

“There’s definitely a shift to everyone moving towards the same direction now, what we’re doing with our symposium is trying to unite that even more,” says Lauren. 

“With COVID it’s been tricky to get everyone in a room and talk about the direction we’re going in, but with our symposium this year there will be a renewed focus on everyone going in the same direction, taking a united approach to tackling this issue. 

“I think there’s likely more that could be done and that’s something that we are always on the lookout for. I think it will be interesting to see in light of the Government inquiry the effect that will have on uniting all the stakeholders in this field.”

Going forward, in addition to the research and collaboration, technology is playing in increasingly central role in the issue. In addition to the advanced neuroimaging which is helping The Drake Foundation in its research, innovations including a mouthguard with a sensor which can deliver real-time information to medical teams on the sidelines, are helping to provide quantifiable statistics which will help to inform research further still. 

“Technology has a huge role to play in it all, in the seven years The Drake Foundation has been in this field, technology has advanced hugely,” says Lauren.

“The advanced neuroimaging that was used in the Drake Rugby Biomarker Study wasn’t part of the original proposal for that study nearly seven years ago, it has been brought along as the study progressed and I think that could turn into a really valuable tool, looking at changes to microstructures to the brain that can’t be picked up by standard MRI. 

“What we don’t know at the moment are the long-term changes to white matter or vasculature so that will be a really interesting one to follow over the next few years, there is no short cut there so we need longitudinal studies using advanced neuroimaging. 

“And on the sensor side, I think big data has done a lot, not just in this field but in science and medicine, so I think the more data we can gather can only be a good thing. 

“What is important is how the data is then used whether it’s all put into one big data set, can we use that as a common data set, is the data comparable across different studies and sports, that will be an interesting one to see over the coming years.” 

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