04 November 2019
Evidence underpins innovation, practice and quality. One of our major activities – the registers – is all about evidence. The registers develop the evidence in rheumatology via scientific publications. While the registers started life as biologics registers, they now encompass targeted therapies and biosimilars. New evidence, more evidence and more papers continue to accrue.
All efforts recruiting patients to the registers has created multiple outputs. This reference list of all 100+ published papers and letters contains all registers publications on record since 2003. It’s our contribution to evidence in global rheumatology.
There are now FOUR registers under the BSR umbrella:
The long-standing RA register still has a strong stream of annual outputs
The AS register, closed to recruitment, is now in its publishing phase, with a range of analyses
The PsA register has only just begun recruiting, so it will be a few years before it develops a publication presence
The paediatric and adolescent papers from the JIA register are also included in this new resource.
What can you do with the list?
Filter by register, by journal or see only the papers published by third party users (researchers who work outside of the core Manchester [RA and JIA Registers] and Aberdeen [AS and PsA Registers] teams)
Play around. There are some dense statistical modelling and methods questions, plus ‘treatment with biologics’ questions. Social, psychological and QoL material is there too
See who has made use of the data for their own papers and the questions they have asked and answered. Maybe your little grey cells have now started whirring with your own ideas...
What can you see on the list?
The default setting is date order, the most recent at the top, and the papers are assigned to subject categories. I’m confident of the ‘serious infection’ and ‘cancer’ categories so you can identify everything from those subject areas. Most of the other categories stand up to scrutiny, but do be careful and sense check.
Material has now appeared in over 20 different journals, reflecting the number of third-party data users who have applied successfully for data for their own projects over recent years.
While you may have spotted papers in Rheumatology or Annals relatively easily, there have also been other papers in an extensive range of other rheumatology and statistical journals, as well as in some more surprising places such as the International Journal of Geriatric Psychiatry. Some are clinical; some are methodological; some explore the use of huge datasets, or address clinical questions about treatment for RA, PsA or AS. All are on the list.
What else?
Have you any questions about these outputs? Are any missing? Any observations about the outcomes? Any other critiques? What publications could you create, having reviewed these? Is there a review article you might like to write? Is there scope for outputs that could be of use to nurses in their conversations with patients?
What next?
We'll add new ones when they come out online. Check back now and again and see what’s new. Send any observations/questions on this list to bsrbr@rheumatology.org.uk.