SIRAS-2
Research type
Research Study
Full title
Scotland Registry for Ankylosing Spondylitis (SIRAS) Study - PART 2
IRAS ID
197207
Contact name
Linda E. Dean
Contact email
Duration of Study in the UK
0 years, 2 months, 0 days
Research summary
In 2007, a group of rheumatologists from Scotland and Northern Ireland created the Scotland and Ireland Registry for Ankylosing Spondylitis (SIRAS). The purpose of this was to conduct and promote studies in Ankylosing Spondylitis (AS) through the establishment of a registry of AS patients from across Scotland and Ireland. This was successful in Scotland, although no patients from Northern Ireland were ever recruited, due to research governance issues in the province that were insurmountable during the period of recruitment. The registry includes both clinical information, from medical records, and self-reported information, from yearly postal questionnaires including measures of quality of life. As part of the initial study, participants were given the opportunity to consent to future contact.
Building on the original registry, the current study (SIRAS-2) is a follow-up study which aims to collect additional information, among SIRAS participants - only those who consented to participation in future research. This new data will include long-term quality of life and occupational information, plus information in disease domains not previously collected, including measures of disease flares and dental health.
We intend, in the future, to conduct more intensive investigations into:
(a) disease flares;
(b) dental health; and
(c) the microbiome (gut health)
in persons with ankylosing spondylitis. However, these investigations are not fully developed and depend, in part, on the responses to the currently proposed questionnaire survey. Therefore, these three additional investigations DO NOT form part of the current protocol or ethics application. In due course, separate approval will be sought for these sub-studies.Thus, the current application relates ONLY to the questionnaire survey. However, in the survey, we are re-asking participants to give consent to be contacted again.
REC name
East of Scotland Research Ethics Service REC 2
REC reference
16/ES/0030
Date of REC Opinion
7 Apr 2016
REC opinion
Further Information Favourable Opinion