Newsletter – August 2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this August 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of thirteen groups round the UK whose aim is to interest people with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

Past events from PEMRIG that you may have missed:

‘The microbiome-gut-brain axis and probiotics in Parkinson's' can be watched at: recording link. You can catch up with the online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’, at this link.

PEMRIG visited Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research and how this is automated. Here is a link to hear the visit again: recording link. A summary of the visit to her laboratory will appear on the PEMRIG website soon.

WHAT’S NEXT FROM PEMRIG?

13th Annual PEMRIG Research and Welfare Forum ‘LIVING WELL WITH PARKINSON’S’. Saturday, September 7th, ‘10.00am to 4.00pm.

This free Event which includes lunch and refreshments is organised by PEMRIG for the local Parkinson's community and is supported by Parkinson's UK.

· Location: Nottingham Trent University & Conference Centre, Lecture Room 2 Teaching and Learning Building, Clifton Campus, Nottingham, NG11 8NS. This venue is easily accessible from Junction 24 of the M1 and blue badge and normal parking is available on site.

· This event is now fully booked so thank you to everyone who has already registered to attend! If you are still keen to attend, click here by 29th August and add your details to our waiting list though we cannot guarantee additional spaces will become available. You can find details of this and other research events both online and in person on the Parkinson's UK website at: this link.

Programme:

10.00 - 10.30am - Registration and coffee/tea.

10.30 - 10.40am - Welcome by John Turner, PEMRIG Chair.

10.40 - 11.20am - Dr Lynne Barker, Associate Professor in Cognitive Neuroscience, Shefield Hallam University: ‘The gut microbiome and gut-brain axis in Parkinson's: what have we learned so far and possible ways to enhance wellbeing’.

11.20 - 11.40am - Refreshments break, networking and marketplace.

11.40 - 12.20pm - Dr Bhanu Ramaswamy OBE (Independent Physiotherapist)

‘Strength training and brain health’.

12.20 - 1.00pm - Chris Stanley (Retired PE teacher and British Nordic Walking Instructor) -We are Undefeatable: Living Well with Parkinson’s through Exercise’, and Sara Jane

McCracken (Parkinson's Specialist Nurse and British Nordic Walking Instructor) – ‘Results of a Nordic Walking survey into the impact, accessibility and diversity of Nordic Walking in People with Parkinson’s’. 1.00 - 2.00pm - Lunch break

2.00 - 2.40pm - Dr Simon Stott, Director of Research at Cure Parkinson's: Keynote address:

An Update on Parkinson’s Research in 2024 and beyond”.

2.40pm - 3.10pm - Helen Scarr (Hatha Yoga & Meditation Instructor): Seated yoga, breathwork and meditation session

3.10pm - 3.25 pm Final Q & A and closing remarks 3.25pm - 4.00 pm Extra time for networking, chatting, visiting information stands, and having refreshments before heading home.

A few minutes have been allowed for questions from the floor after each talk. Alternatively, submit your questions in advance to Peter Barrett at docpete920@gmail.com. We hope that speakers will be around all day so should be available to answer your questions during and at the end of the meeting. If you have any queries about this event, please contact the organiser, John Turner, by email at: Pemrig.uk@gmail.com

Acknowledgements

This event is subsidised by local branches and by Parkinson’s UK. PEMRIG is grateful for funding for this Forum from the Leicester and Nottingham branches of Parkinson's UK in addition to money given in memoriam from some special people from the Derby Branch who had an interest in research.

____________________________________________________________________________________

AUTUMN ONLINE RESEARCH SEMINAR - PEMRIG is in the process of organising an online visit to a major Pharmaceutical Company to hear about their Parkinson’s research. Details to follow.

____________________________________________________________

Recent talks about Parkinson’s.

‘Finding the energy: What goes wrong with mitochondria in Parkinson’s disease’ was the title of the latest talk and questions in the No Silver bullet 4PD series by Prof Sonia Gandhi of University College, London. You will find this very informative talk at: https://www.youtube.com/watch?v=DttWHq8ch9o.

‘What have I learned from speaking to 30 Parkinson's researchers.’

Michel Planquart, co-organiser of the No Silver Bullet 4PD series of YouTube talks, has recently recorded an interview with the above title. He makes some very thoughtful points such as that loneliness is a main predictor of the outcome of one’s Parkinson’s. He asks how many PwP have been told this by their consultants and have been advised to join a branch of

Parkinson’s UK for the company and support. Click on this link to hear Michel’s comments: https://youtu.be/iZVogrN1aHU.

‘Practical strategies for a happier life with Parkinson's’. This was the title of the very helpful and positive No Silver Bullet interview with Dr Michael Okun, Professor of Neurology and Director of the Norman Fixel Institute for Neurological Diseases at the University of Florida Health. If you missed it, you could hear it again at: https://www.youtube.com/watch?v=cdXPIU7KoO4.

PARKINSON’S RESEARCH NEWS

1. How many trials examining the clinical development of new drug-based therapies for Parkinson’s do you think were active on January 31st, 2024?

Would you guess 10, 25 or even as many as 50? Surely not when we know such trials are expensive to run. Amazingly, a report in the Journal of Parkinson’s Research, Volume 14 (2024) pages 899–912 reveals that 136 trials of drugs targeting different aspects of Parkinson’s were active on January 31st, 2024; this figure has apparently stayed about the same for the last five years. The authors noted that only 35 of the 136 were new trials registered since 31st January 2023. The remaining 101 were longer running trials. This report includes a Plain Language Summary for non-specialists and the easy way to find the report is to type DOI 10.3233/JPD-240272 into your browser.

The authors of the report have examined the ClinicalTrials.gov website to track the progress of Phase 1, 2 and 3 trials of drugs which aim to either improve the symptoms of Parkinson’s (symptomatic treatments) or slow or reverse disease progression (disease-modifying treatments). The authors remind us that in a Phase 1 trial the safety of a drug is tested, usually in healthy people while in Phase 2 trials both the safety and some aspects of the effectiveness (efficacy) of the drug are tested in a small group of people with Parkinson’s (PwP). Phase 3 trials assess the long-term safety and the effectiveness of a drug in a much larger group of PwP. The authors point out that because the causes of Parkinson’s in many people are not well understood many drugs need to be tested to discover which may be useful to improve symptoms or to slow or reverse progression. We are also reminded that testing a drug successfully through Phases 1 and 2 to a final Phase 3 trial is a very long process. 30% of the 136 active trials recorded are in Phase 1 while 58% are in Phase 2. Disappointingly, only 12% are at a Phase 3 level where information from the trial if successful might be used to give results to move the drug into the clinic. Of the 136 trials recorded, 56% were defined as targeting Parkinson’s symptoms (both motor and non-motor) while 44% were classed as disease modifying.

The report highlights the fact that the number of trials investigating drugs aiming to improve the non-motor symptoms of Parkinson’s has increased from previous years. This is also true for the number of drugs targeting inflammation which is now seen as a driver of Parkinson’s progression. To learn a bit more about inflammation in Parkinson’s there is a webinar at this link.

The authors of the report conclude that the development and testing of new drugs to improve both the symptomatic and the disease-modifying aspects of Parkinson’s remains very healthy with a wide variety of new drugs being developed and evaluated in Phase 1 and 2 trials.

However, they express disappointment that the number of Phase 3 trials especially of disease-modifying therapies is disappointingly low. Lack of a full understanding of the complexity of Parkinson’s biology is mentioned as a possible explanation. The authors also hope that the rapid introduction of a new trials technique whereby several compounds can be tested against a single placebo with a continuous measurement of results will allow for a quicker transition of compounds between Phases 1 to 3 leading to the faster testing of novel compounds. This is the ACT-PD project which you can learn more about on a Cure Parkinson’s YouTube video at this link.

PARKINSON’S TRIALS AND EVENTS NEEDING VOLUNTEERS

1. INVESTIGATING MITOCHONDRIA AS A FUTURE TARGET FOR PARKINSON’S THERAPIES.

Mitochondria are small oganelles that produce the energy needed for cells to function normally. When mitochondria don’t work properly, cells don’t get enough energy. This could be what causes nerve cells to die in Parkinson’s. Genes in our DNA determine the structure of the mitochondria in our cells. Tora Smulders-Srinivasan at Teesside University has been investigating how changes to these genes may affect the symptoms of Parkinson’s. The research is currently being conducted in fruit flies.

Tora is applying for a Parkinson’s UK project grant to investigate one of the gene changes that she has found improved symptoms of Parkinson’s in fruit flies. She aims to investigate this in more detail before going on to look at these genes in human cells. This research will improve our knowledge of how mitochondria may be involved in Parkinson’s and help us move towards better treatments. Before she applies, she would like to talk to people affected by Parkinson’s to understand their views on her research plans and to hear suggestions to improve her research.

What is involved? Tora needs several people with Parkinson’s, their carers, partners and friends to either

1, join her in a 1.5-hour long discussion group online by video call eg zoom, during the week beginning the 9th of September or the 16th of September, or

2, to answer some questions about the proposed research via email by September 23rd

To get involved please email Anne at researchinvolvement@parkinsons.org.uk. Include in your email, a) your connection with Parkinson’s, b) whether you would rather join a discussion group or answer some questions via email, and c) if you prefer to attend a discussion group, please indicate when you are available during the weeks of 9th and 16th September, and if there are specific times that would be better for you. Please express your interest by Monday, September 2nd.

2. COMPLETE A NEUROSURVEY TO HELP IMPROVE SERVICES.

Completing this Neurosurvey will help build up a picture of what care and support is like for people with neurological conditions in the UK and Republic of Ireland. The survey is conducted every 2 years by the Neurological Alliance. There are 4 Alliances across the UK that are made up of charities that support people living with neurological conditions like Parkinson's.

Everyone deserves access to the right care, treatment and support at the right time, no matter who you are or where you live. Too often we know this isn’t the case for people with Parkinson’s. If you have Parkinson’s or care for someone who does, please take the survey at this link.

Each year the Neurological Alliance uses the survey results to influence the government and NHS. You can see the campaign's progress in this video. We want people who provide support for someone with a neurological condition such as Parkinson’s to take part. It should take around 20 minutes to complete and is conducted by a third party. It is completely anonymous and secure. You can also complete this survey over the phone. Please get in touch with myneurosurvey@revealingreality.co.uk or on 020 7735 8040 (standard network rates apply) to request a phone call.

The survey is open until 15 November 2024.

Sharing your experiences helps build a picture of treatment, care and support for people affected by neurological conditions throughout the UK and the Republic of Ireland. This means the Neurological Alliance can understand more about the change that is needed and can take the necessary action to bring about improvements.

3. SHARE YOUR THOUGHTS ON THE ROLL-OUT OF FOSLEVODOPA-FOSCARBIDOPA, A NEW TREATMENT FOR ADVANCED PARKINSON’S

In November 2023 Foslevodopa-foscarbidopa was approved by NICE for treating advanced Parkinson's. To ask how this new treatment has been received and rolled out, Dr Eva Bunting and colleagues at King’s College Hospital, London have contacted organisations that care for people with Parkinson's to ask how this new treatment has been received.

Dr Bunting’s group would like to hear what people with Parkinson’s (PwP) think about the results of their survey. The group is particularly keen to understand which findings in their survey are most important to PwPs. The group have drafted recommendations and a care pathway for healthcare professionals to use in relation to this new treatment. Eva and her group would now like feedback on their draft recommendations and care pathway to ensure that they fit the needs of PwP.

PwP, their carers and friends are now needed to read the draft recommendations and care pathway proposal and to answer some questions. You will then join an online zoom discussion group during the second week in September to review the proposals. To join the discussion group email Anne at researchinvolvement@parkinsons.org.uk by August 20th. Include in your email, your connection to Parkinson’s. when you or your loved one were diagnosed with Parkinson’s, what county you live in and which of the following dates you are available

· Tuesday 3 September, 4-5pm

· Wednesday 4 September, 10-11am

· Thursday 5 September, 1-2p

4. Developing a talking therapy for people with Parkinson’s who experience anxiety. Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th, 2024.

5. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears, or feels things that aren’t there. This can be very distressing for the person and their loved ones. Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College, London, The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway, in Derby. See below for who to contact at these study centres. For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

New Guide: Exercise, Brain Health and Parkinson’s –

Use the link below to access a downloadable new review of exercise and Parkinson’s by the Michael J Fox Foundation. Nordic walking is included as being beneficial so it is appropriate that the September open meeting being organised by PEMRIG features two speakers discussing the benefits of Nordic walking. Use this link to access the MJFF site.

If you are interested in Parkinson’s research and would like to be put on PEMRIG’s mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.comPEMRIG

Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

Newsletter – July 2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this July 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of thirteen groups round the UK whose aim is to interest people with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

Past events from PEMRIG that you may have missed:

‘The microbiome-gut-brain axis and probiotics in Parkinson's' can be watched at: recording link. You can catch up with the online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’, at this link.

PEMRIG visited Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research and how this is automated. Here is a link to hear the visit again: recording link.  A summary of the visit to her laboratory will appear on the PEMRIG website soon.

WHAT’S NEXT FROM PEMRIG?

13th Annual PEMRIG Research and Welfare Forum ‘LIVING WELL WITH PARKINSON’S’. Saturday, September 7th, ‘10.00am to 4.00pm.

Please join PEMRIG at our 13th Research and Welfare Forum. This free Event which includes lunch and refreshments is organised by PEMRIG for the local Parkinson's community and is supported by Parkinson's UK.

Location: Nottingham Trent University & Conference Centre, Clifton Campus, Nottingham, NG11 8NS. This venue is easily accessible from Junction 24 of the M1 and there is plenty of parking on site.

Click the following link to register and a ticket will be sent to your email address: https://www.eventbrite.co.uk

The programme is as follows:

10.00 - 10.30am - Registration and coffee/tea.

10.30 - 10.40am -  Welcome by John Turner, PEMRIG Chair.

10.40 - 11.20am - Dr Lynne Barker, Associate Professor in Cognitive Neuroscience, Shefield Hallam University: ‘The gut microbiome and gut-brain axis in Parkinson's: what have we learned so far and possible ways to enhance wellbeing’.

11.20 - 11.40am - Refreshments break, networking and marketplace.

11.40 - 12.20pm - Dr Bhanu Ramaswamy OBE (Independent Physiotherapist)

‘Strength training and brain health’.

12.20 - 1.00pm - Chris Stanley (Retired PE teacher and British Nordic Walking Instructor) -We are Undefeatable: Living Well with Parkinson’s through Exercise’, and Sara Jane

McCracken (Parkinson's Specialist Nurse and British Nordic Walking Instructor) -  ‘Results of a Nordic Walking survey into the impact, accessibility and diversity of Nordic Walking in People with Parkinson’s’.

1.00 - 2.00pm - Lunch break

2.00 - 2.40pm - Dr Simon Stott, Director of Research at Cure Parkinson's: Keynote address: Summary of the latest Parkinson’s drug trials and results.

2.40pm - 3.10pm - Helen Scarr (Hatha Yoga & Meditation Instructor): Seated yoga, breathwork and meditation session

3.10pm - 3.25 pm Closing Remarks and final Q & A
3.25pm - 4.00 pm Forum Closes, with extra networking time for chatting, visiting information stands, and having some refreshments before heading home.

A few minutes have been allowed for questions from the floor after each talk. Alternatively, submit your questions in advance to Peter Barrett at docpete920@gmail.com. Speakers will be around all day so should be available to answer your questions at the end of the meeting. If you have any queries about this event, please contact the organiser, John Turner, by email at: Pemrig.uk@gmail.com

Acknowledgements

This event is subsidised by local branches and by Parkinson’s UK. PEMRIG is grateful for funding for this Forum from the Leicester and Nottingham branches of Parkinson's UK, as well as money given in memoriam from some special people from the Derby Branch who had an interest in research.

____________________________________________________________________________________

AUTUMN ONLINE RESEARCH SEMINAR - PEMRIG is in the process of organising an online visit to a major Pharmaceutical Company to hear about their Parkinson’s research. Details to follow.

______________________________________________________

Recent talks about Parkinson’s.

Did you miss the recent No Silver Bullet talk entitled ‘Why I am optimistic that we might now have a Silver Bullet for PD’, by Dr Jonathan Sackner-Bernstein MD and the very long Q & A session? If you want to hear it try this link.

A recent No Silver Bullet interview with Dr Michael Okun entitled ‘Practical strategies for a happier life with Parkinson's’ was very helpful and positive.  If you missed it, you can hear it again at this link.

PARKINSON’S RESEARCH NEWS

The Type 2 diabetes drug Lixisenatide gives positive results in the large LixiPark Phase 2 trial part-funded by Cure Parkinson’s.

The results of a one-year, Phase 2 clinical trial of the Type 2 diabetes drug Lixisenatide show that it may slow the progression of motor/movement symptoms in Parkinson’s. Those participants receiving the Lixisenatide treatment showed a slowing down in the progression of their motor symptoms compared with those on the placebo drug whose mobility continued to decline. The effect of Lixisenatide on motor function continued even after treatment with the drug had stopped.

These new results with Lixisenatide are exciting because they back up what was found recently in smaller trials with Exenatide, another Type 2 diabetes drug which works in the same way as Lixisenatide. A large Phase 3 trial of Exenatide is now in progress in the UK. Both Lixisenatide and Exenatide are what are known as GLP-1 receptor agonists and are clinically approved for the treatment of diabetes so much is already known about the safety features of these drugs for their use in humans. Importantly, they have demonstrated beneficial actions in the brain making them an area of interest for Parkinson’s. Use this link to read more about how Lixisenatide and Exenatide work in the body: https://cureparkinsons.org.uk/2024/04/phase-2-trial-results-of-lixisenatide-published/

The nerve cell-replacement trial STEM-PD is proceeding to the next stage based on positive safety data.

Parkinson’s is characterised by the loss of dopamine-producing nerve cells (neurones) in the brain leading to problems with movement and other effects. Therefore, a nerve cell transplantation technique is being tested as a potential treatment for replacing the dopamine-producing nerve cells that are lost in Parkinson’s. STEM-PD is the ongoing clinical trial that is measuring the safety and tolerance of this nerve cell-replacement technique.

The transplanted dopamine-producing neurons are produced from stem cells which by manipulating their culture conditions can be directed to grow into dopaminergic neurones ready for transplantation. This joint trial is taking place in Sweden where four Parkinson’s patients have already received the new nerve cells and the good news is that all four people are doing well with no side effects of major concern. This positive result has led the STEM-PD team to select another four patients who will receive a larger number of the replacement nerve cells. The first of these four new patients has already received the higher dose of transplanted nerve cells. Though the main point of the trial is to establish that the technique is safe, the STEM-PD team, led by Professor Roger Barker of Cambridge (UK) and Professor Gesine Paul-Visse at Lund in Sweden will now start examining whether the transplanted cells produce clinical benefits along with how well they survive. Read more about this work at this link.

LITHIUM and PARKINSON’S

Yes, you read it correctly. Lithium, discovered in the 1960’s as a simple and inexpensive drug for combatting mood disorders, is now to be evaluated in a small Phase 1b clinical trial to study whether it could be repurposed to slow Parkinson’s progression. Cure Parkinson’s and the Van Andel Institute are funding the recruitment of a small number of Parkinson’s patients onto a clinical trial led by Professor Guttuso at the University of Buffalo in the USA.

Lithium therapy has been shown to be beneficial in several animal models of Parkinson’s and Professor Guttuso has hypothesised that the reduced risk of smokers developing Parkinson’s as known from many cohort studies may be due to the high levels of lithium found in tobacco. Lithium has several neuroprotective effects which could be important in slowing Parkinson’s progression such as reducing inflammation and oxidative stress, as well as improving mitochondrial function, known to be impaired in Parkinson’s. A small pilot study by Professor Guttuso in 2019 to explore the potential effect of lithium in people with Parkinson’s gave sufficiently promising results that low-dose lithium therapy has been prioritised for another trial. The paper describing this earlier study can be found at this link.

The researchers in this trial obviously cannot make invasive measurements on the brains of the trialists to follow if lithium is having an effect on progression. So, they will follow how lithium affects the levels of two well defined biomarkers of Parkinson’s progression which are less invasive to measure. The biomarkers are a nuclear protein known as Nurr1 where levels of this protein in white blood cells correlate with Parkinson’s progression and the ‘free water’ in specific areas of the brain which can be measured non-invasively by MRI and which increases as nerve cells die. More information about Nurr1 and ‘free water’ in this lithium trial can be found in a recent edition of the Cure Parkinson’s newsletter at this link.

PARKINSON’S TRIALS AND EVENTS NEEDING VOLUNTEERS

1. Exploring experiences of mouth care in people with Parkinson’s.

Researchers from the University of Sheffield want to find out what people with Parkinson’s do to keep their mouth, teeth and dentures healthy. They also want to know if having Parkinson’s has affected this and if there has been a change over time. The researchers need 15 people with Parkinson’s and 15 carers. Taking part will involve having an interview with a researcher online, by phone or attending in person if you are near Sheffield. You will be reimbursed with a £15 voucher for taking part.

Contact Jessie Tebbutt by MOB: 07703179151 or email   Jessie.tebbutt@sheffield.ac.uk if you are interested in helping. The deadline for taking part is August 1st, 2024. Read the participant information sheet at this link.

2. Developing a talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th, 2024.
  

3. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears, or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College, London,
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres. For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

New Guide: Exercise, Brain Health and Parkinson’s –

Use the link below to access a downloadable new review of exercise and Parkinson’s by the Michael J Fox Foundation. Nordic walking is included as being beneficial so it is appropriate that the September open meeting being organised by PEMRIG features two speakers discussing the benefits of Nordic walking. Use this link to access the MJFF site:  https://www.michaeljfox.org/news/new-guide-exercise-brain-health-and-parkinsons

If you are interested in Parkinson’s research and would like to be put on PEMRIG’s mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.comPEMRIG

Newsletter comments, queries and submissions to the Editor at  martin69747@gmail.com

Newsletter – May 2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this May 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest people with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

Past events from PEMRIG that you may have missed:

‘The microbiome-gut-brain axis and probiotics in Parkinson's' can be watched at: recording link. You can catch up with the online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’, at this link. PEMRIG visited Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research and how this is automated. Here is a link to hear the visit again: recording link.

WHAT’S NEXT FROM PEMRIG?

The 13th Annual PEMRIG Research and Welfare meeting ‘CONTINUING TO LIVE WELL WITH PARKINSON’S’. September 7th 10.00am to 4.00pm.

This is an all day Face to Face meeting with free lunch and refreshments. The keynote speaker, Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust, will give a round up of current research and trials. Other speakers at the meeting include Dr Lynne Barker (gut-brain-microbiome axis, Sheffield Hallam), Dr Bhanu Ramaswamy (Strength training and brain health, Hallamshire Physiotherapy Ltd), Chris Stanley and Sarah McCracken (Nordic Walking for Parkinson’s) and Helen Scarr (Yoga for Parkinson’s).

The full programme will appear in the June Newsletter with a link so you can register to attend.

This meeting is being held at the Conference Centre of Nottingham Trent University on the Clifton Campus, Nottingham NG11 8NS which is readily accessible from Junction 24 of the M1. PEMRIG greatly appreciates the input of Emma Parkinson and her team from Parkinson’s UK for helping us organise this event.

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Upcoming Parkinson’s talks and discussions

Wednesday, May 5th 5.00pm – 6.00pm. A Cure Parkinson’s webinar on ‘Inflammation and Parkinson’s – understanding its role and recent advances in research’

The Cure Parkinson’s team are inviting you to hear a panel of experts including Professor Malú Tansey (University of Florida), Dr Kirsten Scott and Cure Parkinson’s trustee Alison Anderson discuss inflammation and its role in Parkinson’s. Recent advances in clinical trials within this field of research will also be discussed. Register for this webinar by going to the Cure Parkinson’s website at this link.

Inflammation is a hot topic in Parkinson’s research at the moment with a trial of azathioprine going on in Cambridge and Parkinson’s UK partnering with a US company to help develop a potential new drug to target inflammation in the brain areas affected by Parkinson’s. The Parkinson's Virtual Biotech programme is providing £2.1million to this 2-year project, which if successful, could see the drug move towards testing in people in clinical trials.

For more information on inflammation in Parkinson’s use this link.

Saturday, May 11th, 10.30am-1.30pm. An online meeting on ‘Medications for Parkinson’s: Current, new and in development.’ Join SERIG, the South East Research Interest Group, at their online Spring Research Conference to hear Helen Groves, Shelley Jones, Dr Kevin McFarthing and Professor Camille Carroll discuss why we need dopamine, the evolution and future of drug treatments for Parkinson’s, and the potential of drug repurposing to find new treatments. The registration page can be found at this link.

Next No Silver Bullet talk - Monday 13th May at 7.00pm - ‘Practical strategies for living a happier life with Parkinson's’. The speaker, Dr Michael Okun, is a worldwide leader on Parkinson’s disease. He is a Professor of Neurology and Director of the Norman Fixel Institute for Neurological Diseases at the University of Florida Health. Register for this talk at this link.

If you missed the last No Silver bullet talk by Dr Michelle Sexton on ‘How can medical cannabis help people with Parkinson's’ you can listen to it via this link: https://www.youtube.com/watch?v=SyPwBlCrHzM

PARKINSON’S TRIALS NEEDING VOLUNTEERS….!

1. Exploring experiences of mouth care in people with Parkinson’s.

Researchers from the University of Sheffield want to find out what people with Parkinson’s do to keep their mouth, teeth and dentures healthy. They also want to know if having Parkinson’s has affected this and if there has been a change over time. The researchers need 15 people with Parkinson’s and 15 carers. Taking part will involve having an interview with a researcher online, by phone or attending in person if you are near Sheffield. You will be reimbursed with a £15 voucher for taking part.

Contact Jessie Tebbutt by MOB: 07703179151 or email   Jessie.tebbutt@sheffield.ac.uk if you are interested in helping. The deadline for taking part is August 1st 2024. Read the participant information sheet at this link.

2. Developing a talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th, 2024.
  

3. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2-month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

4. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears, or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.]For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial at this link.

New Guide: Exercise, Brain Health and Parkinson’s –

Use the link below to access a downloadable new review of exercise and Parkinson’s by the Michael J Fox Foundation. Nordic walking is included as being beneficial so it is appropriate that the September open meeting being organised by PEMRIG features two speakers discussing the benefits of Nordic walking. Use this link to access the MJFF site:  https://www.michaeljfox.org/news/new-guide-exercise-brain-health-and-parkinsons

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

Newsletter – APRIL  2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this April 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

Past events from PEMRIG that you may have missed:

‘The microbiome-gut-brain axis and probiotics in Parkinson's' can be watched at: recording link. You can catch up with the online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’, at this link. PEMRIG visited Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research and how this is automated. Here is a link to hear the visit again: recording link.

WHAT’S NEXT FROM PEMRIG?

The online visit in May to MSD Pharma: Drug Discovery in Neuroscience to hear about their Parkinson’s research is postponed until the autumn.

13th Annual PEMRIG Research and Welfare meeting ‘CONTINUING TO LIVE WELL WITH PARKINSON’S’. September 7th 10.00am, to 4.00pm

This is an all day Face to Face meeting with free lunch and refreshments. The keynote speaker, Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust, will give a round up of current research and trials. Other speakers at the meeting will include Dr Lynne Barker (gut-brain-microbiome axis, Sheffield Hallam), Dr Bhanu Ramaswamy (Strength training and brain health, Hallamshire Physiotherapy Ltd), Chris Stanley and Sarah McCracken (Nordic Walking for Parkinson’s) and Helen Scarr (Yoga for Parkinson’s). The full programme for this event will be given in the May or June newsletter.

This event will be held at the Conference Centre of Nottingham Trent University, on the Clifton Campus, Nottingham NG11 8NS which is readily accessible from Junction 24 of the M1. PEMRIG greatly appreciates the input of Emma Parkinson and her team from Parkinson’s UK for helping us with this event.

The link to register for this 13th PEMRIG Face to Face meeting will be available soon-so put this date in your diary now to reserve the day!

Next ‘No Silver Bullet ‘lecture – Monday 22nd April from 7.30 to 9.30pm

‘How can medical cannabis help people with Parkinson’s’?

Dr Michelle Sexton is an integrative medicine specialist and respected pioneer in the field of medical cannabis. She has over thirty years of experience as a herbalist and naturopathic doctor. Her NIH-funded pre-doctoral and postdoctoral research investigated cannabis use in patients with Multiple Sclerosis and its impact on inflammatory markers. She practices medicine in California. Register for this event at this link.

RESEARCH NEWS  

The latest eletter from Cure Parkinson’s (https://cureparkinsons.org.uk) reports the good news that a Phase 2 clinical trial of lixisenatide has shown positive results, indicating that this Type 2 diabetes drug has the potential to slow the progression of motor symptoms in Parkinson’s. This result matches similar findings with exenatide, another type 2 diabetes drug which has also been found to slows motor symptom progression. The eletter gives some detail of how these drugs work. A bigger Phase 3 exenatide trial is currently in progress in the UK and should report its findings in late 2024.

PARKINSON’S TRIALS NEEDING VOLUNTEERS….!

1. Exploring experiences of mouth care in people with Parkinson’s.

Researchers from the University of Sheffield want to find out what people with Parkinson’s do to keep their mouth, teeth and dentures healthy. They also want to know if having Parkinson’s has affected this and if there has been a change over time. The researchers need 15 people with Parkinson’s and 15 carers. Taking part will involve having an interview with a researcher online, by phone or attending in person if you are near Sheffield. You will be reimbursed with a £15 voucher for talking part.

Contact Jessie Tebbutt by MOB: 07703179151 or email   Jessie.tebbutt@sheffield.ac.uk if you are interested in helping. The deadline for taking part is August 1st 2024. Read the participant information sheet at this link.

2. Developing a talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th 2024.
  

3. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

4. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.]For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial, at this link.

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

PEMRIG

PARKINSON’S EAST MIDLANDS RESEARCH INTEREST GROUP

Newsletter – MARCH  2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this March 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

If you missed PEMRIG’s very successful 2023 online research meeting on ‘The microbiome-gut-brain axis and probiotics in Parkinson's' you can listen to it here: recording link.

WHAT’S NEXT FROM PEMRIG?

April 3rd 11.00am - 1.00pm. Online visit to Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research work.

Register for this lab visit at this link.

My Parkinson’s research is centralised on the idea of finding ways to support dopamine neurons and to prevent their loss. While much research is focused on dopamine neurons themselves, it is important to note that they do not exist alone in the human brain and receive and require many signals and molecules for support and function from other cell types, most importantly astrocytes. Therefore, the focus of my research is on understanding whether dopamine neuron loss in Parkinson’s is due to a lack of support by astrocytes and to find ways in which we can boost this support to promote dopamine neuron survival.

Modelling the complexity of the human brain for Parkinson’s research is difficult. However, a recent technology allows us to take skin cells from Parkinson’s patients and reprogramme these skin cells into induced pluripotent stem cells (iPSCs). These iPSCs can be turned into any cell type in the body and we have developed protocols to produce iPSC-derived dopamine neurons and astrocytes for research. My work uses these iPSC-derived dopamine neurons and astrocytes to study communication between these two cell types, as well as astrocyte support of dopamine neurons in Parkinson’s.

Additionally, my work involves developing drug therapy avenues to boost either astrocyte support of dopamine neurons or dopamine neuron function in Parkinson’s.

Book this date – May 13th 2 - 4pm. Why? Because PEMRIG have an online visit via Microsoft Teams to MSD Pharma: Drug Discovery in Neuroscience to hear about their Parkinson’s research. More information to come in the April newsletter.

September 7th:10.00am to 4.00pm 13th Annual PEMRIG Research and Welfare meeting ‘CONTINUING TO LIVE WELL WITH PARKINSON’S’.

This is an all day Face to Face meeting (10.00am – 4.00pm) with free lunch and refreshments. The keynote speaker, Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust, will give a round up of current research and trials.

Dr Lynne Barker (Sheffield Hallam) and Dr Bhanu Ramaswamy (Hallamshire Physiotherapy Ltd) have also agreed to talk at this meeting.

This event will be held at the Conference Centre of Nottingham Trent University, on the Clifton Campus, Nottingham NG11 8NS which is readily accessible from Junction 24 of the M1. PEMRIG greatly appreciates the input of Katie Smith and her team from Parkinson’s UK for helping us with this event.

The booking link for this meeting will be available in the March and subsequent PEMRIG Newsletters.

March 11th online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’. If you missed the two talks in this meeting, you can listen to a recording at this link.

CURE PARKINSON’S – sign up for their March e-newsletter at   https://cureparkinsons.org.uk/newsletter/. 

Then, read about The Movers & Shakers ‘Parky Charter’ petition. Please sign the petition to swell the numbers.

Also, note the latest Cure Parkinson’s spring research round-up to be held on April 17th from 1.30pm to 6.00pm. You can book a virtual place at this meeting to hear from their funded researchers about updates from the upcoming Montelukast trial and the Lixipark study results. 

PARKINSON’S TRIALS NEEDING VOLUNTEERS….!

1. Developing a talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th 2024.
  

2. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.]For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial, at this link.

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

April 3rd 11.00am - 1.00pm. Online zoom visit to Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research work.

Register for this lab visit at this link.

Dr Lang describes her research work: Parkinson’s research is centralised on the idea of finding ways to support dopamine neurons and to prevent their loss. While much research is focused on dopamine neurons themselves, it is important to note that they do not exist alone in the human brain and receive and require many signals and molecules for support and function from other cell types, most importantly astrocytes. Therefore, the focus of my research is on understanding whether dopamine neuron loss in Parkinson’s is due to a lack of support by astrocytes and to find ways in which we can boost this support to promote dopamine neuron survival.

Modelling the complexity of the human brain for Parkinson’s research is difficult. However, a recent technology allows us to take skin cells from Parkinson’s patients and reprogramme these skin cells into induced pluripotent stem cells (iPSCs). These iPSCs can be turned into any cell type in the body and we have developed protocols to produce iPSC-derived dopamine neurons and astrocytes for research. My work uses these iPSC-derived dopamine neurons and astrocytes to study communication between these two cell types, as well as astrocyte support of dopamine neurons in Parkinson’s.

Additionally, my work involves developing drug therapy avenues to boost either astrocyte support of dopamine neurons or dopamine neuron function in Parkinson’s.

September 7th:10.00am to 4.00pm 13th Annual PEMRIG Research and Welfare meeting ‘CONTINUING TO LIVE WELL WITH PARKINSON’S’.

This is an all day Face to Face meeting (10.00am – 4.00pm) with free lunch and refreshments. The keynote speaker, Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust, will give a round up of current research and trials.

Dr Lynne Barker (Sheffield Hallam) and Dr Bhanu Ramaswamy (Hallamshire Physiotherapy Ltd) have also agreed to talk at this meeting.

This event will be held at the Conference Centre of Nottingham Trent University, on the Clifton Campus, Nottingham NG11 8NS which is readily accessible from Junction 24 of the M1. PEMRIG greatly appreciates the input of Katie Smith and her team from Parkinson’s UK for helping us with this event.

The booking link for this meeting will be available in the March and subsequent PEMRIG Newsletters.

PARKINSON’S TALKS, RESEARCH AND TRIALS

Developing a device to monitor symptoms of Parkinson’s at home.

A new opportunity to help with research has recently been announced by Parkinson’s UK. Researchers at the University of Wolverhampton are developing a device to monitor movement symptoms of Parkinson’s at home. They are organising workshops for people with Parkinson’s, their caregivers, and healthcare professionals to help develop the device. They need up to 20 people with Parkinson’s, or who care for someone with Parkinson’s or are a healthcare professional working with people with Parkinson’s. You must have access to a laptop and the internet if taking part online.

What is involved?

You will be asked to take part in a workshop either online by Microsoft Teams or in person in the West Midlands. The workshop will last for 2 hours including breaks and will include discussions about the device and participants’ experiences. The Workshops will be video recorded and support is available for those unfamiliar with this software. 

For more information, please read the participant information sheet  or
contact Tina Smith by email at tina.smith@wlv.ac.uk if you have any questions 

The deadline for taking part in this research is 29 February 2024.

Developing talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals

If you have questions about participating in this study contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513.
The deadline for taking part in this research is September 30th 2024.
  

Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.

You will either receive the study treatment (CBD) or a placebo treatment (such as a sugar pill) for 12 weeks. You will be asked to attend up to 6 visits either over the telephone, online, or at your local research centre or your home. Each visit will last between 1 and 3 hours. During the visits, you may be asked to give blood samples, complete surveys, or physical examinations. Your expenses will be reimbursed for your participation in this research.
  

For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial, at this link.

Parkinson’s: diet and the gut vs the brain

Cure Parkinson’s held a very interesting webinar earlier this month on this very important topic. If you missed this discussion a recording of the webinar available to watch again can be found at this link.   

There were so many questions that Cure Parkinson’s is putting these together with replies from the panellists in a separate FAQ folder to be issued shortly. Watch out for a link to these questions in the next PEMRIG Newssheet.

To keep up to date with all future webinars from Cure Parkinson’s along with their latest research and fundraising news, sign up to their newsletter here: https://cureparkinsons.org.uk/newsletter/. 

THE ROLE OF FOCUSSED ULTRASOUND IN THE MANAGEMENT OF PARKINSON’S

Dr Raul Martinez- Fernandez gave a fascinating presentation in the latest No Silver Bullet series. His talk provoked a very informative and positive Q&A which is well worth listening to at: this link.

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

PEMRIG

PARKINSON’S EAST MIDLANDS RESEARCH INTEREST GROUP

Newsletter – JANUARY  2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and anyone else reading this first newsletter of 2024. Please consult the PEMRIG website (click here) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

If you missed PEMRIG’s very successful 2023 online research meeting on ‘The microbiome-gut-brain axis and probiotics in Parkinson's' you can listen to it here: recording link.

WHAT’S NEXT FROM PEMRIG?

March: an evening online talk-Title: ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’. (Date and time to be finalised)

Summary: Embark on a journey with "Navigating Parkinson's," a special presentation crafted for patients and their families. Gain an update on advancements in Parkinson's research and potential breakthroughs in treatment options or disease management. Explore the world of advanced imaging techniques, helping us visualize and track changes of the brain in Parkinson's. Plus, discover the latest in digital tools designed to monitor and enhance the well-being of those affected by PD. Join us for an informative and supportive session, where we navigate through the complexities of Parkinson's together.

May/June/July: Online[M1] [M2]  visits to one or possibly two laboratories to hear first-hand about their Parkinson’s research. (Dates are being finalised).

September 7th: All day Face to Face meeting (10.00am – 4.00pm) with lunch and refreshments on ‘Living well with Parkinson’s’ to include a research round-up by keynote speaker Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust.

We are currently looking for a suitable venue in the Nottingham area. In view of the success of PEMRIG’s last Face to Face meeting it could be worth booking this date in your diaries right now. PEMRIG greatly appreciates the input of Katie Smith and her team from Parkinson’s UK for helping us with this event

HOT NEWS – PEMRIG is involved in local research at Nottingham University to develop a wearable wrist device to reduce Parkinson’s tremor

PEMRIG congratulates Professor Stephen Jackson and his colleagues at Nottingham University on the award of a grant from Parkinson’s UK to research the development of a wearable wrist device to reduce Parkinson’s tremor by electrical stimulation of the median nerve. Two members of PEMRIG are collaborators on the grant and will assist in experimental design and with help in recruiting local volunteers with Parkinson’s for testing and trials.

Professor Jackson writes:

We have demonstrated that delivering rhythmic electrical stimulation to the median nerve at the wrist can be used very effectively to substantially reduce the severity and frequency of unwanted movements and vocalisations (known as tics) in individuals with Tourette syndrome. We have successfully worked with a medical device company to design a prototype ‘watch-like’ therapeutic device that can be used outside the clinic to deliver median nerve stimulation on demand, and thereby to reduce vocal and motor tics.

We have been contacted by very many individuals with Parkinson’s to ask if this approach might be effective in treating their tremor symptoms. Tremor is one of the main motor symptoms of Parkinson’s and occurs in approximately 75% of individuals. Tremor in Parkinson’s has a unique pathophysiology compared to other motor symptoms (e.g., bradykinesia and rigidity) and has a variable response to medication. For this reason, neuromodulation using stimulation of the median nerve at the wrist could offer an attractive, non-drug, treatment for the improvement of Parkinson’s tremor. We know that Parkinson’s tremor can be temporarily suppressed by delivering non-invasive brain stimulation to the cortical sensorimotor area. The award of this grant will allow us to determine whether sequences of median nerve stimuli that target the cortical sensorimotor area in the brain will effectively suppress PD tremor symptoms, and if so, whether this approach could be incorporated into a wearable therapeutic wrist device that can be used outside the clinic.

PARKINSON’S TALKS, RESEARCH AND TRIALS

Dr Simon Stott - Parkinson’s trials roundup.

If you want an overview of the important Parkinson’s trials of 2023 and what to look out for in 2024 go to the No Silver Bullet website and find the latest talk. This was given by Dr Simon Stott, Head of Research at the Cure Parkinson’s Trust, on Monday January 15th. Dr Stott’s talk will give you some encouragement that many new drugs to treat different aspects of Parkinson ‘s are being investigated even though it will be some years before they reach the clinic for use.

Click this link to access the website.

PARKINSON’S TRIALS SEEKING PARTICIPANTS

Two opportunities to help with research have recently been announced by Parkinson’s UK. These trials focus on the mental wellbeing of people with Parkinson’s about coping with negative emotions. 

1. Developing talking therapy for people with Parkinson’s who experience anxiety

Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s.

You will take part in a 1 hour interview by phone or on a video call in which the researchers will ask for your thoughts on what may help or hinder people with Parkinson’s taking part in talking therapy and what Acceptance and Commitment Therapy could look like for people with Parkinson’s. 

For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals

If you have questions about participating in this study contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513.
The deadline for taking part in this research is September 30th 2024.
  

2. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

In addition, the CAN-PDP trial is still recruiting to investigate:

CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.

You will either receive the study treatment (CBD) or a placebo treatment (such as a sugar pill) for 12 weeks. You will be asked to attend up to 6 visits either over the telephone, online, or at your local research centre or your home. Each visit will last between 1 and 3 hours. During the visits, you may be asked to give blood samples, complete surveys, or physical examinations. Your expenses will be reimbursed for your participation in this research.
  

For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial, at this link.

Sign up for the Cure Parkinson’s Trust e-newsletter.

The January edition of the Cure Parkinson’s Trust e-newsletter has just appeared in my in-box. One section describes preliminary results of a clinical trial conducted in France which was co-funded by the Cure Parkinson’s Trust. The study involved 156 people with Parkinson’s, who were either treated with the Type 2 diabetes drug lixisenatide or a placebo ‘dummy’ drug, for 12 months. The initial results have demonstrated that lixisenatide significantly slowed the progression of motor symptoms in people with Parkinson’s over the year’s trial. People with Parkinson’s on the placebo continued to experience progression of their symptoms.

Lixisenatide belongs to a class of drugs called GLP-1R agonists, and is very similar to another drug that Cure Parkinson’s has been investigating for Parkinson’s called exenatide.

There are several other interesting facts about drug trials and Parkinson’s in this e-newsletter. You can sign up to get on the mailing list at this link: https://cureparkinsons.org.uk/your-permissions/

MOVERS AND SHAKERS PODCASTS – Rory Cellan-Jones, Gillian Lacey-Solymar, Mark Mardell, Paul Mayhew-Archer, Sir Nicholas Mostyn, and Jeremy Paxman discuss the realities of life with Parkinson's at this link.

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

          PEMRIG

PARKINSON’S EAST MIDLANDS RESEARCH INTEREST GROUP

                           Newsletter – DECEMBER 2023

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and anyone else reading this December newsletter. Please consult the PEMRIG website (click here) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on at the moment.

WHAT’S NEXT FROM PEMRIG?

If you missed PEMRIG’s very successful online research meeting on ‘The microbiome-gut-brain axis and probiotics in Parkinson's' you can listen to it here: recording link

PEMRIG is currently planning its 2024 programme. So if you have suggestions for forum topics for online and/or Face-to-Face meetings please email your ideas to PEMRIG’s Chair John Turner at Pemrig.uk@gmail.com

MORE ON DIET AND PARKINSON’S

If you are interested in diet and Parkinson’s you won’t want to miss the next talk in the No Silver Bullet series to be held at 7.30pm on December 11th when Professor Bas Bloem will be discussing 

‘The importance of nutrition in managing Parkinson's".

There is a growing focus on nutrition in relation to proper care for Parkinson's disease. Professor Bloem will explain how a well-balanced diet can enhance symptom management and maximise the benefits of medication. He will also provide helpful advice on ensuring adequate nutrition. Professor Bas Bloem is consultant neurologist at the Department of Neurology, Radboud University Medical Centre, The Netherlands. He is one of the world’s top Parkinson’s specialists.

To listen to this talk you need to register in advance at this link.

Three websites that deal with diet and nutrition in Parkinson's are at:

https://www.parkinsons.org.uk/information-and-support/diet: 

https://medium.com/parkinsons-uk/supplements-and-parkinsons-81c0310f2c16 and

https://www.parkinsons.org.uk/research/research-blog/ask-expert/whats-gut-got-do-parkinsons

The next CURE PARKINSON’S WEBINAR is on December 6th, 5.00pm to 6.00pm. The title is:

‘Stem cells for Parkinson’s – the latest updates’

Professor Kunath will be joined by: Associate Professor Agnete Kirkeby from the University of Copenhagen who is involved with the STEM-PD study, Dr Cheney Drew of Cardiff University who has been working on patient experience in clinical trials, and patient research advocate Rachel Gibson

Register for this webinar by going on the Cure Parkinson’s website at this link.

This is a really hot topic with stem cell trials in progress and being planned. The results of a Phase 1 clinical trial were announced by pharmaceutical company Bayer AG and BlueRock Therapeutics LP at the International Congress of Parkinson's Disease and Movement Disorders in Copenhagen, Denmark.

In the trial, 12 people with Parkinson’s underwent surgery to receive either a high or low dose of dopamine-producing cells developed from stem cells. The results showed that the treatment was well tolerated with no major safety issues. And after 12 months, participants experienced improvement in their Parkinson’s symptoms, with those who received the higher dose showing greater improvement.

A Phase 2 study to investigate this promising therapy further is now being planned with recruitment expected to begin in 2024. To read more go to the Parkinson’s UK website at this link.

PARKINSON’S TRIALS AND RESEARCH NEWS

1. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker.

You will complete a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training 

Read the participant information sheet for more information

If you are interested in taking part read the information sheet and then
contact Caroline Seton by email c.seton@pgr.reading.ac.uk or phone 07367 301 282.
The closing date for taking part is 4 June 2024. 

2. Evaluating a digital app that supports the mental health of people with Parkinson’s

Researchers at City University want your thoughts on a new digital app developed to support the mental health of people with Parkinson’s. They want to find out if the app helps to improve mental wellbeing and hear your opinion on how it could be improved to best support you.

The researchers need 60 people with Parkinson’s who have a need for mental health support and who can access the internet at home, such as with a phone or computer.

For more details: read the participant information sheet at this underlined link or contact Cathryn Pinto by email at  Cathryn.pinto@city.ac.uk or phone on 02070 404 041 for more information. The deadline for joining this trial is February 1st 2024.

3. Can cannabidiol (CBD) reduce symptoms of hallucinations and delusions in people with Parkinson’s?

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend study visits with them.

You will either receive the study treatment (CBD) or a placebo treatment (such as a sugar pill) for 12 weeks. You will be asked to attend up to 6 visits either over the telephone, online, or at your local research centre or your home. Each visit will last between 1 and 3 hours. During the visits, you may be asked to give blood samples, complete surveys, or physical examinations. Your expenses will be reimbursed for your participation in this research.
  

For more information, please read the participant information sheet.

HOT TOPICS FROM THE WORLD PARKINSON’S CONGRESS – July 4-7th 2023 in Barcelona. Every three years the whole Parkinson’s community gets together for the World Parkinson’s Congress. This year the congress was held in Barcelona between 4–7 July. Parkinson’s UK have put together a blog which brings you some of the research highlights. Read the blog at this link.

If you are interested in Parkinson’s research and would be interested in joining our committee or want to be put on our membership list, contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor at martin69747@gmail.com

  PEMRIG

PARKINSON’S EAST MIDLANDS RESEARCH INTEREST GROUP

                           Newsletter – NOVEMBER 2023

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and anyone else reading this November edition of the PEMRIG newsletter. Please consult the PEMRIG website  (click here) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on at the moment.

If you are interested in joining our committee or want to be put on our membership list, contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

WHAT’S NEXT FROM PEMRIG?

12th PEMRIG Annual Research Meeting

Saturday 28th October 2023 10.30-12.30pm

    ‘The microbiome-gut-brain axis and probiotics in Parkinson's' 

You might still be in time to register for this research meeting at: this registration link

CURE PARKINSON’S NOVEMBER 1st RESEARCH UPDATE MEETING AT 2.00pm

The Cure Parkinson’s Research Update Meetings bring you the most up to date news on the research they are funding. The theme of this meeting is ‘Repurposing and repositioning drugs for Parkinson’s’ and the main speaker is Professor Oliver Bandmann, Professor of Movement Disorders Neurology and Honorary Consultant Neurologist at the University of Sheffield.

His talk is about ‘UDCA: the discovery and assessment of this promising drug for Parkinson’s’.

AGENDA

2.00 pm   Welcome and opening remarks - Helen Matthews (CEO)

2.05 pm   Professor Oliver Bandmann - UDCA followed by a Q&A session

3.00 pm   Break

3.30 pm   Georgia Mills, Research Project Manager, UCL – The EJS-ACT-PD multi-arm, multi-stage clinical trials platform followed by discussion

4.00 pm   Cure Parkinson’s research update – Dr Simon Stott, Director of Research

4.30 pm   Q&A session

5.00pm    close

To attend this meeting on line, use this link to go to the Cure Parkinson’s site to register.

Professor Bandmann’s talk is about UDCA (ursodeoxycholic acid), a drug used to treat a type of liver disease. But some research has shown that UDCA can also boost energy production by mitochondria in brain cells. Mitochondria are the batteries of cells making the energy needed to drive all cellular processes. There is evidence that in Parkinson’s mitochondria are not producing enough energy to support the function of certain brain cells which then die. By improving the function of mitochondria, brain cells may be able to survive longer.

       An early clinical trial with UDCA in 31 people conducted in Sheffield has shown that the drug UDCA is safe to take, that it improved mitochondrial activity in brain cells and the improved energy production by brain mitochondria might have effect on gait. A much larger trial which runs for a longer period is now needed to assess whether UCDA can slow Parkinson’s progression. 

         This use of an established drug to treat a new condition is known as ‘repurposing’ and the advantages are that the earlier work has shown that the drug is safe to use in humans. 

PARKINSON’S RESEARCH NEWS AND TRIALS

LIXISENATIDE - Preliminary results from the LixiPark study, a 1 year, Phase 2 clinical trial, show that this Type 2 diabetes drug gives positive results on slowing the progression of motor or movement symptoms in Parkinson’s. A full results analysis is expected to be published in early 2024.

This is another exciting example of a drug already in use being repurposed for trials in Parkinson’s. Cure Parkinson’s is involved in this trial and full details about the lixisenatide preliminary results are available at this link.

1. Evaluating a digital app that supports the mental health of people with Parkinson’s

Researchers at City University want your thoughts on a new digital app developed to support the mental health of people with Parkinson’s. They want to find out if the app helps to improve mental wellbeing and hear your opinion on how it could be improved to best support you.

The researchers need 60 people with Parkinson’s who have a need for mental health support and who can access the internet at home, such as with a phone or computer.

For more information about what is involved please read the participant information sheet. 

Contact Cathryn Pinto by email at  Cathryn.pinto@city.ac.uk or phone on 02070 404 041 for more information. The deadline for joining this trial is February 1st 2024.

2. Can cannabidiol (CBD) reduce symptoms of hallucinations and delusions in people with Parkinson’s?

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend study visits with them.

You will either receive the study treatment (CBD) or a placebo treatment (such as a sugar pill) for 12 weeks. You will be asked to attend up to 6 visits either over the telephone, online, or at your local research centre or your home. Each visit will last between 1 and 3 hours. During the visits, you may be asked to give blood samples, complete surveys, or physical examinations. Your expenses will be reimbursed for your participation in this research.
  

For more information, please read the participant information sheet.

3. The PALOMA Study -  a chance to help with Parkinson’s research

This is a low risk observational study with no medicines to take. The Paloma study is testing new software that measures eye movement to see if it can detect Parkinson’s progression more quickly than current clinical assessments. This trial has been approved by Cure Parkinson’s and by Parkinson’s UK. The study needs volunteers who are

1, aged between 40 to 85 years old, and

2, are within 5 years of their initial Parkinson’s diagnosis.

The study clinics for the trial are in Castle Donington Derbyshire and Little Baldon Oxfordshire so it is more relevant to people with Parkinson’s in the Leicestershire, Derbyshire, and Oxfordshire  areas though if you are prepared to travel to the study clinics you may be suitable as out of pocket expenses will be reimbursed.  Paloma will also pay you £200 for taking part if you complete all study visits. 

To learn more about the PALOMA TRIAL and to find out if you are eligible phone Paloma on 01332 429760 or email: paloma@thevctc.com

HOT TOPICS FROM THE WORLD PARKINSON’S CONGRESS – July 4-7th 2023 in Barcelona

Every three years the whole Parkinson’s community gets together for the World Parkinson’s Congress. This year the congress was held in Barcelona between 4–7 July. Parkinson’s UK have put together a blog which brings you some of the research highlights. Read the blog at https://medium.com/parkinsons-uk/highlights-from-the-world-parkinson-congress-hot-topics-710accb60476

PEMRIG Newsletter comments, queries and submissions to the Editor at martin69747@gmail.com

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and anyone else reading this August edition of the PEMRIG newsletter. The newsletter has been shortened to include just some key notes. Please consult the PEMRIG website (click here) for details of past laboratory visits and seminars.

PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on at the moment.

If you are interested in joining our committee or want to be put on our membership list, contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

WHAT’S NEW FROM PEMRIG?

A recording of the PEMRIG visit to Bristol to hear about the Parkinson’s research of professor Jon Lane is available at:  Jon Lane Zoom Lab Visit June 2023 A report on the visit is on the PEMRIG website at  Jon Lane Lab Visit with Glossary

WHAT’S NEXT FROM PEMRIG?

Saturday, October 28th – 10.30am – 12.30pm. Join us for a PEMRIG online research meeting discussing aspects of ‘Probiotics, diet and Parkinson’s’. Speakers booked so far are Professor Chaudhuri (King’s College, London) talking about the Symprove probiotic trial and Dr Maria Doitsidou (Edinburgh) discussing the role of gut microflora, particularly Bacillus subtilis, in Parkinson’s. A third speaker discussing the gut-brain axis in Parkinson’s has been invited. A link to register for this online meeting will be in the September newsletter.

PARKINSON’S RESEARCH NEWS AND TRIALS

Exploring the relationship between the Physical and Psychological Symptoms of Parkinson's.

Can you help a Philip Hodgson, a Clinical Specialist Physiotherapist, with his research by answering some questions? As part of his ongoing research Philip is collecting the views of both physiotherapists and people with Parkinson's/Carers about the relationship between the physical and psychological symptoms of Parkinson’s.

The basis of the research is that both physical and psychological symptoms of Parkinson’s disease can have a profound impact on an individual’s daily function and quality of life, with this impact increasing as the condition progresses. The relationship between common physical and psychological symptoms has not been explored in detail and his surveys aim to increase our understanding of any psycho-physical symptom interactions that may occur, with the aim of improving current interventions/treatments.

People living with Parkinson’s, their carers/family members, and physiotherapists are best placed to provide first-hand experience of the many challenges posed by both the physical and psychological symptoms of the condition. If you have Parkinson’s or are a carer and want to help Philip with his research click the direct link to the active survey below:

Survey Form. If you are a Physiotherapist to access your survey form please click here

PARKINSON’S TRIALS

Testing a Device to help control drooling.

Cue Band is an 8-week study looking for 100 people with Parkinson’s who experience drooling. It involves wearing a device on your wrist which sends vibration prompts to help with swallowing. You will be able to keep the wrist-worn device at the end of the trial. You will need access to a smart phone. More details available at: this Link

Slowing Parkinson’s progression – Ambroxol

ASPro-PD is the exciting Phase 3 trial investigating the use of Ambroxol, a cough medicine available in Europe shown in Phase 2 trials to slow Parkinson’s progression. This new Phase 3 trial aims to recruit 330 people with Parkinson’s across 10-12 clinical centres in the UK to confirm the promising results of the 2018 AIM-PD Phase II trial. Everyone taking part in this trial will be genetically screened as part of the selection criteria. The trial organisers want to recruit people diagnosed with Parkinson’s in the last 6 years and who are under age 75. Ambroxol is one of a small number of drugs prioritised by the International Linked Clinical Trials programme run by the Cure Parkinson’s Trust and the Van Andel Institute. This trial is described in the latest edition of Cure InSight, the Cure Parkinson’s spring newsletter and in Parkinson’s News Today at https://parkinsonsnewstoday.com/news/parkinsons-clinical-trial-test-cough-medicine-ambroxol/

A tool kit to help you feel better with Parkinson’s – join the trial

This recently advertised study aims to improve the health and well-being of people with Parkinson's by testing the effectiveness of a ‘Live Well with Parkinson’s’ Toolkit compared to usual care in a clinical trial. The toolkit is available online and on paper and aims to help increase the active involvement of people with Parkinson’s in the management of their care, including how to keep healthy and independent, where to access resources and how to manage their Parkinson’s. The toolkit is facilitated by a ‘Supporter’ who will guide you over the period of the trial. To ask for more information or to join phone the Toolkit team on 07788530669 or email them on pd-care@ucl.ac.uk Deadline for signing up is June 30th but has been extended.

Cannabidiol (CBD) and Parkinson’s psychosis? A Phase 2 CAN-PDP trial.

Investigators need 120 people with Parkinson’s who are over 40 years old, have experienced any symptoms of psychosis for at least one month, have been stable on any Parkinson’s medications or antipsychotic treatment for at least one month and are not taking clozapine. Previous studies not only suggest that CBD may be useful in treating psychosis, they also suggest that it is safe to use in older adults. The purpose of this trial is to look at how safe and well CBD works in patients with Parkinson’s disease psychosis, and how well it is tolerated. The investigational medicine is not expected to modify the progression of Parkinson’s disease. Full details at: this Link

PEMRIG Newsletter comments, queries and submissions to the PEMRIG Editor at martin69747@gmail.com