Neurological Disease Severity Assessment Study
Research type
Research Study
Full title
Neurological Disease Severity Assessment Study
IRAS ID
192163
Contact name
Aimee Donald
Contact email
Sponsor organisation
The University of Manchester
Duration of Study in the UK
1 years, 4 months, 31 days
Research summary
This study is designed to reconsider how disease severity is assessed in a range of Neurological conditions. It will utilise assessment of specific aspects of disease and new technologies aiming to improve integrity of assessment.
There will be a focus on ‘neurodegenerative diseases’, where severity assessment becomes important in timing interventions and providing prognosis. Having robust tools by which severity can be evaluated also creates opportunities to study natural history of disease.
The difficulties in assessing severity and progression are problematic in neurodegenerative diseases where the disease is so rare that a specific scoring tool has not been developed. Patients can have difficulties complying with the examinations or intellectual deficits may affect cooperation. The assessment tools which are available are often time consuming and fail to reflect ‘real-life’ experience; symptoms such as walking ability may vary in different environments, different times of day or following different events. Assessments of severity carried out in a hospital clinic may therefore not be a true reflection of disease activity.
Eye movements and sense of smell have been selected as a focus in this study as they can be impaired early and progressively in a range of neurodegenerative diseases. They are difficult to assess objectively and sometimes overlooked, it is wondered that if these aspects of disease are monitored they may serve as surrogate markers of disease progression and severity over time. There measurement is also non-invasive and rapid and therefore more acceptable to patients.
Motor function will also be a focus of the study, looking at how well new approaches to assessment of motor function relate to other markers of disease severity.
Finally, patient reported outcomes of different aspects of disease will be assessed; mainly aspects which affect quality of life such as sleep, mood and fatigue and also quality of life itself.REC name
Wales REC 5
REC reference
16/WA/0129
Date of REC Opinion
22 Apr 2016
REC opinion
Favourable Opinion