Introduction: what is the BSRBR-AS?
The British Society for Rheumatology Biologics Register in Ankylosing Spondylitis (BSRBR-AS) is a study funded by the British Society for Rheumatology. We have tracked the progress of people with axial spondyloarthritis (axSpA), who were taking biologic therapy, and people who have never taken such therapy.
People with axSpA, across Scotland, England and Wales, were recruited through their local NHS rheumatology centres. Recruitment to the study started on 03/12/2012 and ended on 31/12/2017. Follow-up data collection stopped on the 30/06/2018. The study end date is the 31/12/2018 though analysis of the information collected will continue until 31/12/2020.
We asked participants to fill in questionnaires at regular intervals during their study involvement (for a maximum of five and half years), depending on the medication they were prescribed. We also asked participants to keep a study diary with changes to their medications, note of hospital admissions and referrals. The questionnaires and diary cards were sent by post to participants’ homes, together with a pre-paid return envelope. We also collected data at participants’ routine visits to rheumatology departments plus, if participants had agreed to data linkage, some health information that is held in national NHS databases.
If you have been a BSRBR-AS study participant and want to know more about data linkage and data privacy see the Information for study participants.
- Background and aims
The British Society for Rheumatology (BSR) funded researchers at the University of Aberdeen to co-ordinate the BSRBR-AS study. The study has set out to examine:
- The effectiveness and safety of biologic therapies in the management of axial Spondyloarthritis (axSpA) (including Ankylosing Spondylitis (AS));
- The development and progression of the condition in individuals;
- The impact of the condition on the individual, for instance on their quality of life and work;
- How much does it cost to provide healthcare to people with axSpA
- Use and cost-effectiveness of pharmacological therapies for axSpA;
- The occurrence of additional conditions associated with axSpA (co-morbidities) and their influence on disease progression; and
- Genetics of the condition.
Access to the BSRBR-AS dataset
External researchers can apply to access and analyse the anonymised BSRBR-AS dataset to answer important research questions. However there are some limitations on which data can be used. All third party data requests and contracts are handled by the British Society of Rheumatology. For initial enquiries contact Gareth Jones (Deputy Chief Investigator).
To find out more about the data we collected from study sites, and what we asked participants to report to us, download a copy of the BSRBR-AS Data Catalogue.
- Contact details
BSRBR-AS Co-ordinating Centre
Epidemiology Group, University of Aberdeen
1st Floor, Health Sciences Building, Foresterhill
Aberdeen, Scotland, AB25 2ZD
Telephone: 01224 437 141
- Study sites
85 rheumatology centres throughout the UK contributed to the BSRBR-AS data collection. For a list of contributing study sites click on the link here.
While the study was active we produced a regular newsletter to keep sites up to date with the latest developments. Click on the links below to read the newsletter that interests you: