Ask to take part

Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.

Contact Information:

Ms Marte Theilmann Jensen
marte.jensen.18@ucl.ac.uk


Prof Huw Morris
h.morris@ucl.ac.uk


Riona Fumi
riona.fumi@nhs.net


Riona Fumi
riona.fumi@nhs.net


Ms Marte Theilmann Jensen
marte.jensen.18@ucl.ac.uk


Study Location:

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Be Part of Research - Trial Details - PSP CBD MSA Longitudinal Study UK

PSP CBD MSA Longitudinal Study UK

Medical Conditions

Extrapyramidal and movement 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.


Progressive Supranuclear Palsy, Corticobasal syndrome and Multiple System Atrophy are degenerative brain conditions. We need better methods of diagnosis and tracking disease progression. This can be improved by: a) detailed clinical study of patients with these diseases; b) study of change in patients’ clinical state over time; c)studying “biomarkers” such as blood or spinal fluid diagnosis or tracking the disease course; and d) including studying “biomarkers” such as blood or spinal fluid diagnosis or tracking the disease course; and d) including patients with very early disease who do not currently meet “definite” clinical criteria for disease in this group. Being involved in the study will involve: a) reading the project information sheet and completing a consent form; b) attending a research assessment on 5 occasions over 3 years; c) having a neurological assessment which will take 45 minutes; d) completing questionnaires; e) donating blood samples for research; f) agreeing that you can be contacted by phone or at a clinic appointment on two more occasions at 4 and 5 years. People unaffected by neurological disease will be asked to participate in the study on one occasion by completing questionnaires and assessments and donating blood samples. In some centres patients will be invited to have a lumbar puncture to examine the spinal fluid on three occasions and to have an MRI brain scan on two additional occasions. This will depend on local centres ability to offer these additional tests. We will also establish a UK-wide disease study, which will enable the participation of patients who able to travel to a study centre. Being involved with the UK- wide study will involve reviewing the patient information sheet, completing the consent form, completing a phone interview and returning study questionnaires. We will study improved methods of tracking and diagnosing these conditions. We hope that this will help in the development of new treatments.

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:

31 Mar 2015 31 Jul 2028

Observational

Observational type: Cohort study;



You can take part if:



You may not be able to take part if:


Participant has another medical or psychiatric illness that would interfere in completing assessments. • Participant is pregnant. Lumbar puncture exclusion criteria • Anticoagulants such as warfarin. • Known coagulation abnormalities – known coagulopathy or platelet count <100 • Lumbar spinal surgery within 6 months prior to assessment, or any lumbar spinal surgery that interferes with anatomy of the inter-vertebral spaces. • History of chronic or repeat CSF leakage following previous lumbar puncture, or history of spontaneous or traumatic intracranial hypotension. • Active infectious process. MRI exclusion criteria • Usual local exclusion criteria apply


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

  • Queen's Hospital
    Rom Valley Way
    Romford
    Essex
    RM7 0AG
  • Harrogate District Hospital
    Lancaster Park Road
    Harrogate
    North Yorkshire
    HG2 7SX
  • Salford Royal
    Stott Lane
    Salford
    Greater Manchester
    M6 8HD
  • John Radcliffe Hospital
    Headley Way
    headington
    Oxford
    Oxfordshire
    OX3 9DU
  • Royal Preston Hospital
    Sharoe Green Lane North
    fulwood
    Preston
    Lancashire
    PR2 9HT
  • Poole Hospital
    Longfleet Road
    Poole
    BH15 2JB
  • Christchurch Hospital
    Fairmile Road
    Christchurch
    BH23 2JX
  • The James Cook University Hospital
    Marton Road
    Middlesbrough
    Cleveland
    TS4 3BW
  • Royal United Hospital
    Combe Park
    Bath
    Avon
    BA1 3NG
  • Royal Hallamshire Hospital
    Glossop Road
    Sheffield
    South Yorkshire
    S10 2JF
  • National Hospital For Neurology & Neurosurgery - Queen Square
    Queen Square
    London
    Greater London
    WC1N 3BG
  • Aneurin Bevan University Lhb
    Headquarters - St Cadoc's Hospital
    lodge Road
    caerleon
    Newport
    Gwent
    NP18 3XQ
  • Sunderland Royal Hospital
    Kayll Road
    Sunderland
    SR4 7TP
  • South Tyneside District Hospital
    Harton Lane
    South Shields
    NE34 0PL
  • The Newcastle Upon Tyne Hospitals NHS Foundation Trust
    Freeman Hospital
    freeman Road
    high Heaton
    Newcastle Upon Tyne
    NE7 7DN
  • CHRISTCHURCH HOSPITAL
    RDZ05@2.16.840.1.113883.2.1.3.2.4.18.48
  • London North West University Healthcare NHS Trust
    Northwick Park Hospital
    watford Road
    Harrow
    HA1 3UJ
  • Royal Shrewsbury Hospital
    Mytton Oak Road
    Shrewsbury
    Shropshire
    SY3 8XQ
  • Harrogate And District NHS Foundation Trust
    Harrogate District Hospital
    lancaster Park Road
    Harrogate
    HG2 7SX

Prof Huw Morris
h.morris@ucl.ac.uk


Riona Fumi
riona.fumi@nhs.net


Ms Marte Theilmann Jensen
marte.jensen.18@ucl.ac.uk


Riona Fumi
riona.fumi@nhs.net


Ms Marte Theilmann Jensen
marte.jensen.18@ucl.ac.uk



The study is sponsored by University College London and funded by THE PSP ASSOCIATION .




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for Trial ID: CPMS 17302

Last updated 03 January 2025

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