21 November 2020
BSR's four patient registers are open for business and it's more important than ever for centres across the UK to continue to engage with the studies if they possibly can.
The data collected from these generates vital evidence on patient safety in the long-term as well as the efficacy of treatment. There are new ways to get involved with the Rheumatoid Arthritis (RA) register in particular, with a remote patient consent process and an online portal making contributing data easier.
The new BSRBR-RA Clinical Portal allows NHS trusts to enter data and track patients using the online system. 70% of active sites are using the portal, and feedback from sites has been positive, especially as it allows NHS staff and the BSRBR-RA team to have real-time conversations online about, for example, reports of serious adverse events.
The new system ensures we have the highest quality data in the RA register, which has been captured and coded robustly, and can contribute to research and improvements in rheumatology care.
Due to COVID-19, most rheumatology appointments are now being conducted remotely so the BSRBR-RA team can send you instructions to help you to recruit new patients to the study using the remote consent procedure (details can be found here).
The Rheumatoid Arthritis (RA), Ankylosing Spondylitis (AS) and Psoriatic Arthritis (PsA) registers are also capturing detailed data on COVID-19 in patients participating in the studies.
This allows us to analyse and link our data with other national registers including NHS Digital & the Office for National Statistics in the future, giving us more insight into the short and long-term effects the pandemic is having on our rheumatology community.
If you're able to recruit to any of the studies or re-engage with the work of the registers if you have stopped, please contact the study teams about how to get involved: