PSP CBD MSA Longitudinal Study - UK (PROSPECT-M-UK)
Research type
Research Study
Full title
PROgressive Supranuclear Palsy CorTico-Basal Syndrome Mulitple System Atrophy Longitudinal Study UK (PROSPECT-M-UK)
IRAS ID
149695
Contact name
Huw Morris
Contact email
Sponsor organisation
Joint Research Office UCL
Research 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 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.
REC name
London - Queen Square Research Ethics Committee
REC reference
14/LO/1575
Date of REC Opinion
30 Oct 2014
REC opinion
Further Information Favourable Opinion