The Scottish Treatment in Multiple Sclerosis (STEMS) Project pilot
Research type
Research Database
IRAS ID
239081
Contact name
J.W. Kerr Grieve
Contact email
Research summary
The Scottish Treatment in Multiple Sclerosis (STEMS) Project pilot study
REC name
West of Scotland REC 4
REC reference
18/WS/0128
Date of REC Opinion
3 Aug 2018
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The data collected for the STEMS Project database will include participant-reported data and some clinically derived data. Caldicott approval will be sought to permit the storage of patient-specific data on the secure study database.
Participant-reported data will be collected by a series of web-based questionnaires, or equivalent printed paper questionnaires to contribute to an electronic case report form (eCRF). Participant-reported data is further divided into opportunistically updated data, to include demographic data, as well as co-prescribing and comorbidity information. This will be requested at the point of consent, and participants will be given the opportunity to update this during the study. Outcome questionnaires will be sought at three monthly intervals, requested by reminder email. Current DMT prescribing will also be checked at each interval. Patients will be able to report relapses at any time.
Patient-reported data will largely be entered by participants directly, but study team members will be able to submit data too, on the behalf of participants. For participants who are completing data by postal forms, the address registered on the study database will be used.
Research programme
Our knowledge of many aspects of MS is incomplete. Our basic understanding of the epidemiology is poor. Even in Scotland, where focused clinical teams look after MS patients and services are sufficiently developed to permit relatively uniform clinical care, there has been no complete or reliable census of the frequency of MS in the population. As a result, it is vitally important to develop a resource to drive service delivery and improve further aspects of research into MS for the future.
Research database title
The Scottish Treatment in Multiple Sclerosis (STEMS) Project pilot study
Establishment organisation
University of Dundee
Establishment organisation address
R&D Office, Residency Block Level 3
George Pirie Way
DD1 9SY