Improving diagnostic and care pathways in PSP and CBD
Research type
Research Study
Full title
Improving diagnostic and care pathways in Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD)
IRAS ID
230579
Contact name
Diane Swallow
Contact email
Sponsor organisation
University of Aberdeen
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are rare, rapidly disabling, degenerative brain diseases. Despite patients reporting difficulties in receiving their diagnosis and obtaining appropriate care, there has been little research into how well PSP and CBD are diagnosed and managed, and how this could be improved.
We will identify and invite current patients with PSP/CBD across Scotland to participate in this study to:(a) collect information about how they were diagnosed, delays in diagnosis, and identify any missed diagnostic opportunities; (b) assess whether new physical and memory scales, and brain imaging could help diagnose PSP/CBD earlier; (c) collect information on their disease severity and assess whether they have received the right multidisciplinary care to meet these needs; (d) assess what daily activities they can and cannot do alone to determine if these could measure disease progression. Carers will also be invited to participate because recognising and supporting the needs of carers may influence their ability to cope, and in turn support their family members with PSP/CBD.
Our study will benefit patients with PSP/CBD by telling us: (a) the extent and cause of difficulties in making the correct diagnosis allowing us to target the right health professionals with education; (b) whether new scales or imaging techniques should be used in clinics to help diagnosis; (c) whether the PSP Association care pathway is being followed and if not which areas need improvement; (d) how patients (and carers) fare over time so we understand more about their needs and assess new ways of measuring disease progression to help in future treatment trials.
REC name
Scotland A: Adults with Incapacity only
REC reference
17/SS/0102
Date of REC Opinion
28 Aug 2017
REC opinion
Further Information Favourable Opinion