PROgressive Supranuclear Palsy CorTicoBasal Syndrome Mulitple System Atrophy Longitudinal Study UK (PROSPECTMUK)

Study ID: 17302
Short Title: PSP CBD MSA Longitudinal Study UK
Organisation: University Hospital Southampton NHS Foundation Trust
Location: University Hospital Southampton NHS Foundation Trust
Condition: Parkinson's disease
Main Specialty: Neurological disorders
Expected End Date: 31/12/2019
Postcode: SO16 6YD
Contact Name: UHS R&D Office
Contact Email: R&
Active: Yes

Inclusion Criteria

Written informed consent obtained prior to any study-related procedures.

1. Fulfils clinical criteria for PSP,CBS, MSA or Atypical Parkinsonian syndrome.

2. Participant is 18 years old or older.

3. If participant is demented or cognitively impaired there is an available caregiver that can escort them.

4. Participant has an identified informant.

Exclusion Criteria

Participant has another medical or psychiatric illness that would interfere in completing assessments.

1. Participant is pregnant. Lumbar puncture exclusion criteria.

2. Anticoagulants such as warfarin.

3. Known coagulation abnormalities – known coagulopathy or platelet count.

4. Lumbar spinal surgery within 6 months prior to assessment, or any lumbar spinal surgery that interferes with anatomy of the inter-vertebral spaces.

5. History of chronic or repeat CSF leakage following previous lumbar puncture, or history of spontaneous or traumatic intracranial hypotension.

6. Active infectious process. MRI exclusion criteria.

7. Usual local exclusion criteria apply.

Study summary:

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
e) 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.

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