Talking Parkinson’s Research (formerly NosPRIG Pod)

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.