Involvement Opportunities

Study Title: TORUS

Understanding patient needs and acceptability of technologies to measure Parkinson's symptoms

The purpose of this study is to define the initial requirements for using an in-home monitoring system to track the progression of Parkinson’s, and how does it reflect to participants’ lived experiences of having Parkinson’s?

What’s involved? Participants will asked to an online interview (e.g. using Zoom) that lasts approximately 1 hour. Participants will be presented with the list of movements we are interested to measure and the sensors we will use to measure them. Participants will be asked to discuss how they think of these movements as part of their daily activities, and how monitoring these movements might impact their daily life at home.

Who is elibile to take part? To take part in the study, you will have to be over 18 years old and either have a diagnosis of Parkinson’s or be a carer or next of kin of someone livinging with Parkinson’s. The study is online and researchers would like to invite people from across the North East and Cumbria to take part.

For how long is the study running? Until 30th May 2024.

As a thank you, participants will be given a £25 pounds voucher for their time.

For more information, please contact: Dr Lenia Margariti lenia.margariti@newcastle.ac.uk Tel: 07517084859

Clinical trial: COBALT

Trial of a combination of 2 drugs as a Parkinson’s dementia treatment

The trial will look at the use of a drug called Memantine for treatment of people with Dementia with Lewy Bodies (DLB) and Parkinson’s with dementia (PDD) symptoms. The aim of the trial is to find out if Memantine treatment can help improve overall health and functioning for people with DLB or PDD. Potential participants should be currently taking cholinesterase inhibitors

What’s involved? If you agree to take part, you will  join one of two trial treatment groups for 12 months: a placebo (‘dummy’ drug) group OR a medication (Memantine) group.

You will have planned visits and phone calls with the local trial team, who will ask you about your symptoms, how you feel and your study treatment. A family member or person who knows you well will also be asked to answer questions about your symptoms and about how they are feeling.

Who is elibile to take part? To take part in the trial, you will be aged over 55 years and have been taking an acetylcholinesterase inhibitor (AChEI) medication (for example, Donepezil also called Aricept) for at least 12 weeks.

For how long is the study running? We aim to recruit until 30 September 2024.

There are TWO centres recruiting in the North East, at Darlington and Newcastle.

For more information, please contact your nearest team:

Darlington: Research and Development, Tees, Esk and Wear Valleys NHS Foundation Trust, Flatts Lane Centre, Flatts Lane, Normanby, Middlesbrough, TS6 0SZ TEWV.

Email: ResearchAndDevelopment@nhs.net Tel: 07785 314 627 OR 01642 283501

Newcastle: Helen Croft, Clinical Ageing Research Unit (CARU), Newcastle University, Campus for Ageing and Vitality, Newcastle upon Tyne, NE4 5PL.

Email: helen.croft3@nhs.net Tel: 0191 2820070 (Mon, Wed, Fri) OR 0191 2081242 (Tues and Thurs)

Study Title: Eye movement as a biomarker for early Parkinson’s

Researchers at Newcastle University aim to compare eye movements and images of the back of the eye (retina) of people living with Parkinson’s to people without Parkinson’s to find a test that could help to identify Parkinson’s earlier.

Who is eligible to take part? People with Parkinson’s at all stages are invited to take part. The experiment involves looking at images, some of which move, on a computer screen. Participants who are not comfortable viewing a computer screen for prolonged periods may not wish to take part. Participants should also be free of significant eye disease or visual disorders, such as cataracts and retinal disease. They may wear glasses or contact lenses.

Where does the study take place? The Henry Wellcome Building at Newcastle University.

The study can either be one visit of up to 5 hours, or two visits of up to 2.5 hours each. We aim to keep the visits as short as possible and prioritise participant’s comfort.  Participants will be compensated for their time at £12.50 per hour, and reasonable travel costs.

 For more information contact: Varun Padikal Email: V.P.Padikal2@newcastle.ac.uk or call 07721705006.

Study Title: OACS-3

RECRUITMENT EXTENDED

The development of memory and thinking problems in people with Parkinson’s (PwP)is common, and has a profound effect on patients and carers. At present, there are little in the way of treatment options and no treatments that alter the progression of cognitive decline. Researchers at Newcastle upon Tyne Hospitals and Newcastle University are running a clinical trial to see whether a potential treatment used in other conditions improves cognitive and fatigue symptoms and whether it is safe and well tolerated in PwP. If the results from this small trial show that the treatment might be effective, it could lead to a larger clinical trial. If this study demonstrates some improvements in measurements, it will be a very exciting field of research where little treatment currently exists.
Taking part in this study involves attending 10 trial visits over 6 months. Some of these visits will be at hospital appointments (at the Campus for Ageing and Vitality, Newcastle) and some will be over the phone. Out of the 25 people we plan to take part in this trial, around 10 patients will receive a placebo “dummy” drug and around 15 patients will receive Obeticholic Acid. This is decided randomly, by a computer.

Who is elibile to take part? To take part in the trial, you will be aged between 18 and 79 (inclusive) and have been diagnosed with Parkinson’s with mild memory problems.

For how long is the study running? We aim to recruit until 31st July 2024.

For more information, please contact: Prof. Alison Yarnall alison.yarnall@newcastle.ac.uk

Defining delirium and its impact in Parkinson’s study: DELIRIUM-PD

Dr Rachael Lawson at Newcastle Univeristy is re-opening recruitment to her study investigating delirium in people with Parkinson’s admitted to hospitals in Newcastle, either the RVI (Royal Victoria Infirmary) or the Freeman. The study is funded by Parkinson’s UK. This study received Section 251 support from the Confidentiality Advisory Group. This support helps us to identify people with Parkinson's who may be eligible to take part in the study.

Delirium is a medical word used to describe a change in how the brain works that makes a person become suddenly confused.  Delirium is usually caused by an illness such as an infection. We want to improve our understanding of delirium in people with Parkinson’s, find out how common it is in people with Parkinson’s, how it is identified and to improve the care of people with delirium and Parkinson's. Because we do not know who is likely to be admitted to hospital over the next 18 months, we want to let you know about the study before we start.

For more information, please click on the link below:

Study title: Ocular mictrotremor in Parkinson’s

The aim of this study is to investigate eye movement (ocular micro tremor or OMT). OMT is a small eye movement present in everyone and we are interested in measuring this in people living with Parkinson’s when compared to people who do not have Parkinson’s.

Eye movement difficulties are a key issue in Parkinson’s that is not well understood, and medication does not fully restore them.  We are interested in how eye movements are impacted by Parkinson’s, how they are different to those people who do not have Parkinson’s and whether Parkinson’s medications can change eye movements. Greater understanding of the eye movement impairments involved in Parkinson’s will help with the development of future diagnostic tests.

We hope to recruit people with Parkinson’s and age-matched controls within the North-East of England. This study aims to quickly and non-invasively assess the participants eye movements while seated and looking ahead at a point on the wall using a novel device – the iTremor ONE, Head Diagnostics. Taking part in this study will involve two home visits and a visit to our gait lab at Northumbria University. Each session lasts ~1hr 30mins.

For how long is the study running? Recruiting until September 2024

If you are interested in this study and would like more information, please contact: PhD Candidate, Lisa Graham lisa4.graham@northumbria.ac.uk or Dr Rosie Morris rosie.e.morris@northumbria.ac.uk

Request for Involvement Form

If you need support with your research, from study design to recruitment and dissemination, please complete our form below:

Please send any additional information to support this application and email to parkinsonsnecrig@gmail.com