An Information Registry About Patients With Multiple Sclerosis
Research type
Research Study
Full title
An Information Registry Providing Demographic Details About Patients With Multiple Sclerosis
IRAS ID
187554
Contact name
Paul Matthews
Contact email
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
In-depth awareness of the long term outcomes and needs of patients with complex disorders such as multiple sclerosis (MS) would help in guiding an evidence-based approach to their care.
A Registry based on secure data capture and management tools that can be used by clinical researchers working in different trusts is needed to facilitate development of clinical effectiveness and related research for patient benefit. We aim to evaluate a new data management tool and pilot initiation of a Registry to integrate clinical and patient-centred data for research directed towards improving outcomes for people with MS.
The objectives of this exploratory, observational study are to pilot anonymised joint clinical and patient-centred data collection and to evaluate a new database and associated biological sample tracking and analytical tools.
This study will be multi-site, to include Imperial College Healthcare NHS Trust, Barts and The London NHS Trust, Southern General Hospital Glasgow and John Radcliffe Hospital Oxford
REC name
London - West London & GTAC Research Ethics Committee
REC reference
15/LO/1606
Date of REC Opinion
28 Oct 2015
REC opinion
Unfavourable Opinion