Involvement Opportunities

The iSupport-PD Study

Evaluating a website for care partners of people with Parkinson’s with changes to memory, thinking or behaviour

Changes to thinking and memory are well-recognised and common symptoms of Parkinson’s, even at diagnosis. As symptoms progress, people with Parkinson’s require increasing support from an informal (unpaid) care partner to help maintain quality of life. Despite their important role, there is a scarcity of support for informal carers of people with Parkinson’s with cognitive impairment.

We have worked with care partners and experts to adapt iSupport so that is it relevant for care partners of people with Parkinson’s and cognitive impairment. We would now like to see if our intervention, iSupport-PD, is engaging and suitable to care partners.

What’s involved? This is a 12-month study. This is a trial study, people who take part will be randomised to either access SparC, or continue with your usual support, for 12 months. Everyone will have access to SparC at the end of the study. We will ask you to complete some questionnaires and invite you to take part in an optional interview.

Who is elibile to take part? Adults (18+) who self-identify as an unpaid carer (partners, children, friends etc.) of a person with Parkinson’s and cognitive impairment, who is not living in a full-time care facility, caring at least weekly for at least 6 months. The care recipient must have symptoms of cognitive impairment (through self-report of the care partner, to reflect the ‘real world’ application of iSupport-PD).

Where does the study take place? This is an online study, meaning anyone from the North East and Cubria who is eligible to take part; it is open to carers across the North East and Cumbria.

For more information: Email: isupportpd@northumbria.ac.uk

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:

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