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Contact Information:

Matthew Harding
matt.harding@cpft.nhs.uk


Prof Dag Aarsland
dag.aarsland@kcl.ac.uk


Study Location:

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Be Part of Research - Trial Details - A Lewy Body dementia network longitudinal study in the UK (ENLIST-UK)

A Lewy Body dementia network longitudinal study in the UK (ENLIST-UK)

Recruiting

Open to: Female / Male

Age: 50 Years - N/A

Medical Conditions

Other degenerative diseases of the nervous system
Organic, including symptomatic, mental disorders


This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.


There are 800,000 people with dementia in the UK, and this is expected to rise to over 1 million by 2025. Accurate diagnosis is critical in overall management of patients. Important new findings have shown that biomarkers such as cerebrospinal fluid (CSF) and brain imaging can help to accurately diagnose Alzheimer’s disease (AD). Biomarkers have now been included in the most recent diagnosis guidelines for AD. Less is known about biomarkers for dementia with Lewy bodies (DLB) and dementia associated with Parkinson’s disease (PDD), which together account for 15-20% of all dementia cases. Typically, DLB and PDD are characterised in patients by the presence of cognitive impairments, visual hallucinations and motor symptoms. DLB is diagnosed when dementia develops without parkinsonian symptoms (motor symptoms) or within a year of the onset of parkinsonian symptoms. PDD develops in a context of well-defined Parkinson’s Disease (PD) diagnosis as compared to DLB. Patients with DLB symptoms are frequently misdiagnosed due to their symptoms overlapping with AD and PD. Compared to AD, patients with DLB are particularly sensitive to psychiatric drugs, and have a worse outcome. It is therefore important to accurately diagnose these patients. Early findings indicate that measuring specific markers in CSF can also help to predict the worsening of thinking abilities in DLB.

In this study we will collect CSF, blood and neuroimaging data from 207 patients with suspected DLB, AD or PDD. We expect the majority will have mild dementia or very early problems like mild cognitive impairment. Full analysis of biological samples will be performed by researchers at King’s College London. In addition to already known measures of AD, we will examine new markers in order to see whether they can predict accurately disease outcomes for DLB. Patients will be followed up for three years, with biological markers completed at the beginning of the study and cognitive tests and questionnaires done every year.

Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.  

The recruitment start and end dates are as follows:

21 Feb 2019 31 Aug 2025

Observational

Observational type: Cohort study;



You can take part if:



You may not be able to take part if:


Exclusion criteria 1. Severe physical or life-threatening conditions which may limit ability for the subject to participate in the study. This includes cancer or other conditions with suspected survival time less than three years. 2. Other intracranial pathology (stroke, space occupying lesion, previous intracranial surgery) 3. Other physical or psychiatric conditions which may contribute to cognitive impairment 4. Diagnosis of possible DLB with negative dopamine transporter scan (DaT scan) 5. More than five years use of antipsychotic drugs prior to diagnosis 6. Contraindications to Lumbar Puncture including warfarin and anticoagulant use (if patient has consented to lumbar puncture). 8. Project Partner who is unable to attend all study visits with the participant.


Below are the locations for where you can take part in the trial. Please note that not all sites may be open.

  • Cambridgeshire And Peterborough NHS Foundation Trust
    Elizabeth House,
    fulbourn Hospital
    fulbourn
    Cambridge
    CB21 5EF
  • BETHLEM ROYAL HOSPITAL
    RV505@2.16.840.1.113883.2.1.3.2.4.18.48
  • Maudsley Hospital
    Denmark Hill
    London
    Greater London
    SE5 8AZ
  • THE LAMBETH HOSPITAL
    RV502@2.16.840.1.113883.2.1.3.2.4.18.48
  • St Nicholas Hospital (newcastle Upon Tyne)
    Jubilee Road, Gosforth
    Newcastle Upon Tyne
    Tyne And Wear
    NE3 3XT
  • LADYWELL UNIT
    RV509@2.16.840.1.113883.2.1.3.2.4.18.48

Prof Dag Aarsland
dag.aarsland@kcl.ac.uk


Matthew Harding
matt.harding@cpft.nhs.uk



The study is sponsored by King's College London and funded by ALZHEIMER'S RESEARCH UK .




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for Trial ID: CPMS 40304

Last updated 05 March 2025

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