SLEx database study
Research type
Research Database
IRAS ID
250500
Contact name
Helen Harris
Contact email
Research summary
The Scottish Lupus Exchange Database
REC name
East of Scotland Research Ethics Service REC 2
REC reference
19/ES/0110
Date of REC Opinion
24 Sep 2019
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This project aims to develop a database of SLE patients across Scotland in order to collect data including demographics, medical histories, treatments and outcomes on this group.
All SLE patients attending rheumatology or connective tissue disease clinics at selected hospital throughout Scotland are seen by a rheumatologist or research nurse and enrolled on the database if they consent to do so. They complete some brief questionnaires and have a detailed medical history taken. They are follwed up each time they return for routine appointments.
In addition this project has developed a registry of ‘research ready’ SLE patients who have given prior informed consent, in clinic, to be approached for future research projects from both the commercial and non commercial sectors. These patients will only be approached by the clinicians or research staff delegated that authority by the SLEx group. They will not be approached directly by commercial researchers or research groups not co-ordinated by the SLEx group members locally.Research programme
This project will encourage good links between the Scottish hospitals; meetings face to face and using teleconferencing may take place up to 4 times per year. This will result in sharing of information about good clinical practice in the management of patients with SLE. Participating centres will develop a better understanding of SLE and improve care for patients with this condition in Scotland. In summary the Objectives of this project are: 1.To describe the clinical characteristics and outcomes of SLE patients in Scotland 2.To determine predictors of outcome within this population 3.To identify differences in characteristics, outcomes and practice between Scottish lupus centres 4.To develop a registry for future research projects, subject to approval by the SLEx group.
Research database title
The Scottish Lupus Exchange Database
Establishment organisation
UK Fast
Establishment organisation address
UKFast.Net Ltd
City Tower, Piccadilly Plaza
Manchester
M1 4BT