Talking Parkinson’s Research (formerly NosPRIG Pod)

This month we are heading into new territory with an area of research we haven’t explored at all before. The role of the immune system until relatively recently was never given much attention, as it wasn’t thought to have any real relevance to Parkinson’s. However, our guest in this episode has discovered that isn’t the case, and there are, in fact, important links between immune responses and the progression of the disease. Dr Caroline Williams-Gray, Principal Research Associate at the University of Cambridge, carried out long term studies following people with Parkinson’s and uncovered previously unknown connections which are helping to answer one of the biggest questions - why does Parkinson's develop differently from person to person. She is now focussing on inflammatory changes in the brain, which are thought to have particular relevance to those who go on to develop Dementia.

In this episode we take a look at one of the most significant risks facing people with Parkinson's. The incidence of falling is far higher than the general population, and Dr Natalie Allen has done a wealth of research into the many reasons why it is such a problem amongst the Parkinson's community. She has been looking into ways of improving people's mobility and awareness of their environment to make them safer, and is in the process of formulating effective interventions to further reduce the fall rate.

Exercise is often described as being one of the most important tools for managing Parkinson’s, yet many people find it difficult to start or sustain. In the podcast's first international episode Dr Hanan Khalil, Professor in Physiotherapy at Qatar University explains her extensive research into the barriers that can prevent people with Parkinson's from exercising regularly and keeping it up, and her examination of what kind of interventions are most effective at helping them. Join Dr Julie Jones from the Robert Gordon University in Aberdeen and Helga Macfarlane, who has lived with Parkinson's for twelve years, to find out more.

One of the challenges facing so much Parkinson's research is that it is incredibly difficult to study the dopamine producing cells which are failing, because they are buried deep within the brain. To overcome this problem Dr Charmaine Lang from the University of Oxford harvests skin cells from people with Parkinson's in order to grow them into brain cells in the laboratory and study them. She hopes to be able to identify a process which can protect them from damage, ultimately providing vital information towards the development of new treatments.

In this World Parkinson's Day Special Episode Julie and Helga look back at a selection of the diverse range of Parkinson's research projects the podcast has featured. Listen for news about some big changes ahead for the podcast which is now listened to in more than seventy countries worldwide. This World Parkinson's Day Julie and Helga's message is 'Together we can all help research projects progress towards new treatments and a cure. Volunteer to take part today!'

Professor Heather Mortiboys, Head of Neuroscience and Deputy Dean of the School of Medicine and Population Health at the University of Sheffield is pushing the boundaries of Parkinson's research and drug discovery from every direction. With a particular focus on mitochondria, she has been at the cutting edge of pre-clinical and clinical research, working with cells to develop to models for testing drug compounds. Heather champions public and patient involvement throughout her work and is also deeply committed to mentorship and education, and dedicates significant time to early-career researchers.

Parkinson's UK Virtual Biotech launched in 2017 funded by donors from across the world, with the aim of speeding up research to reduce the timescale for finding new treatments from decades down to years. Over £130m has been invested in high-potential early-stage projects, many of which are now 'coming-of-age' and in the final stages of clinical trials. Dr Lynsey Bilsland is the new Managing Director at the helm of the Virtual Biotech, and the person who's going to lead it into its exciting next phase. Julie and Helga met Lynsey to find out more about her new role and what lies ahead.

To start the fourth series of the podcast we are turning our focus towards the much neglected area of mental health related research. Just over a year ago Becca Hunsdon from the University of Reading began recruiting participants for her PhD project ‘Moving Forward’, exploring a new online group programme she’d developed to offer psychological support and improve quality of life for people with Parkinson’s. Podcast co-presenter Helga Macfarlane volunteered to take part having never been involved in anything like it before. Over the following eight weeks she found huge value in Becca’s sessions, so along with podcast host Dr Julie Jones invited her into the studio to find out the thinking behind its group based online set-up and how, with her own psychotherapy input weaved throughout, it explores mood, emotions and coping, and reconnects participants with their values to support them through unhelpful thoughts and feelings.

Landmark is a ground-breaking research programme aimed at accelerating the search for new treatments by applying cutting edge techniques to gain a new level of insight at cellular level into the changes Parkinson's causes in the brain. Principal investigator Professor Michael Johnson from Imperial College London explains the need across the global research community for the new high quality datasets his team will produce. The project will use tissue samples from the Parkinson's UK Brain Bank, which was set up 22 years ago as a result of the remarkable foresight of Professor David Dexter, who is now the charity's Director of Research. He explains what it was like to see his vision come to fruition when Landmark was launched. The three year research programme brings together a Parkinson's UK led consortium of four major pharmaceutical companies - GSK, Novartis, Roche, and UCB, plus Imperial College London, which was made possible with £4m of funding from the Gatsby charitable foundation. https://profiles.imperial.ac.uk/m.johnson

Parkinson’s UK have published the results of an unprecedented study that’s provided a wealth of new detail into the condition in the UK today. Eighteen million patient records were analysed uncovering the key issues facing the one hundred and sixty-six thousand people with the condition in this country and highlighting up to twenty-one thousand more with no treatment or support while they wait to be diagnosed. With the help of Caroline Rassell, CEO of Parkinson's UK and Lance Lee, the charity's Analytics and Insights Lead, we examine the methodology behind the collection of a data set of this magnitude, how the millions of pieces of information are harmonised to reach accurate results. We also hear how patient privacy is protected when medical records are used for research of this kind and some of the implications of the information the survey has uncovered. If you would like to read more about the research click on this link: https://www.parkinsons.org.uk/research/research-blog/our-research/parkinsons-uk-what-do-we-know

The ground-breaking Predict-PD study has been gathering valuable information from thirteen thousand volunteers for 15 years, in an effort to find ways of identifying those people most at risk of developing Parkinson’s. We catch up with progress so far and find out how the project is continually growing and swapping information with other researchers as science moves ever closer towards the establishing the causes of the world’s fastest growing neurological disorder. Dr Alastair Noyce, the Principal Investigator, is Professor of Neurology and Neuroepidemiology at the Queen Mary University of London. If you are interested in volunteering to take part or just want to find out more, you can do so using this link: https://predictpd.com/en

We are delighted to be focusing this month's episode on a research project that is actively recruiting patient participants all across the UK. The investigation, based at University College London, is looking at whether a medicine currently used to treat nausea and vomiting caused by some cancer treatments, could also help people with Parkinson's and Lewy Body Dementia who experience hallucinations. Read Maria and Desmond's experience of taking part in the Top Hat trial: Blog: https://www.parkinsons.org.uk/research/research-blog/ask-expert/research-reduce-hallucinations-desmond-and-marias-story #Link to Take Part Hub recruitment page: https://www.parkinsons.org.uk/research/top-hat-trial-licensed-drug-parkinsons-hallucination-treatment

In this episode we're turning our attention to a long overlooked area of Parkinson's research; oral health. Despite its importance, little is known about how oral health issues affect quality of life for people living with the condition. Jessie Tebbutt, NIHR Doctoral Clinical Fellow in Special Care Dentistry at the University of Sheffield, has been exploring the existing evidence on the oral health experiences of those with Parkinson's, and identifying key gaps in the current knowledge with a view to helping shape future research priorities.

In this episode we delve deep into science to hear about Professor Ian Ganley's ground-breaking research in the field of mitophagy, one of the body's self cleaning mechanisms that could play a key role in the development of Parkinson's. Not only is Professor Ganley making strides forward in what we know about the process, but his team have invented a prize winning new tool that has revolutionised the pace of progress in this immensely promising area of research worldwide. Further reading: https://www.ppu.mrc.ac.uk/research/principal-investigator/ian-ganley Prof. Ganley's paper on the effects of LRRK2 mutations in mitophagy: https://elifesciences.org/articles/67604

This month the NoSPRIG Parkinson’s research podcast is taking an unusual step away from science and into the arts. We’re joined by Dr Bethany Whiteside, Senior Lecturer at the Royal Conservatoire of Scotland, to find out about her research into specially adapted dance for people with Parkinson’s. She has identified a huge range of benefits for people taking part in the classes, which have movements specially tailored for those with the condition, and why the benefits differ from those of exercise on its own. https://pure.rcs.ac.uk/en/persons/bethany-whiteside https://scottishballet.co.uk/research-and-evaluation/dance-health-research/

Pain is the subject of this month's episode, something that can affect people with Parkinson's in a huge variety of different ways. Dr Jenni Naisby, Assistant Professor of Physiotherapy at Northumbria University has been collecting a vast array or personal experiences of pain in her research looking into how the condition can affect pain processing at multiple levels of the central nervous system, and then find ways of classifying it by its mechanisms. By understanding how pain behaves she hopes to find better ways of treating it. If you would like to read Jenni's latest research, which is funded by the Medical Research Foundation, you can find it below. https://journals.sagepub.com/doi/full/10.3233/JPD-230227 https://journals.sagepub.com/doi/full/10.1177/08919887211023592

In this special episode to mark World Parkinson's Day, we focus on something every person with Parkinson's can do to help in the quest to find new treatments and ultimately a cure. One of the biggest obstacles facing research is finding enough volunteers representing as diverse a population as possible, to help with studies and trials. We also hear first hand, the emotional story of how a patient participation role has led to a new treatment that is transforming the lives of people with Parkinson's. Joining Dr Julie Jones and Helga Macfarlane in the studio are two people with vast but very different experience in the field of PPI: Claire Bale is Associate Director of Research and Involvement at Parkinson's UK, and Sue Whipps, a long standing patient participant along with her husband John, who has Parkinson's.

This month we focus on bone health with the help of our guest Dr Alistair Mackett, a Consultant Geriatrician specialising in Parkinson's at Addenbrookes Hospital in Cambridge and Regional Clinical Lead for the East of England Parkinson's Excellence Network. People with Parkinson's are far more likely to to have poor bone health and a far higher risk of fracture than the rest of the population. We find out why, how this can be prevented and what treatments are available. Parkinson’s Excellence Network https://www.parkinsons.org.uk/professionals/parkinsons-uk-excellence-network , Parkinson's UK Bone Health https://www.parkinsons.org.uk/information-and-support/your-magazine/experts/bone-health-and-parkinsons

Guests: Dr Bhanu Ramaswamy OBE, Independent Physiotherapy Consultant and Honorary Visiting Fellow, Sheffield Hallam University. Dr Alison Williams, Person with Parkinson's, Academic, Artist and Parkinson's Public Speaker This month's podcast sees us shift from the usual focus on quantitative evidence-based research to qualitative research surrounding the subject of self-management in Parkinson's. We find out what this can mean for different people and what research tells us about it.

The benefits of exercise for people with Parkinson's are well known, but if you're struggling to stick to your New Year's resolution to be more active, this episode should give you all the motivation you need! Ledia Alushi Agley's doctoral research at the University of Cambridge, involving more than four hundred participants, saw her co-design a physical health programme for those newly diagnosed with Parkinson's. She shares with us some of the fascinating findings of her study. which also explores current clinical practice in relation to exercise, and the views of healthcare professionals.