The BSRBR-RA is one of the largest studies in the world looking at the long-term safety of new drugs prescribed for rheumatoid arthritis in the real world. It has been capturing data since 2001 and we have now registered over 30,000 participants in the study.
We are different from a clinical trial, as we do not influence the treatment participants receive, but rather watch what happens when participants take the treatment that is prescribed by consultant rheumatologists.
Although these treatments are fully licensed and prescribed by the NHS, there is still a need to monitor their impact in the long term, which is the main role of the BSRBR-RA.
What is involved in being part of the BSRBR-RA?
Currently, data is collected from participants via questionnaires every six months for three years, and information on drug changes, hospital admissions and referrals is collected in a study 'diary'.
Questionnaires are sent in the post when they are due. If you have received a reminder to complete one of our questionnaires, you can download a blank copy of the baseline form or the follow-up form to post back to the study offices. If you are returning a follow-up questionnaire, please also include a diary (see above) for the same period. Please note that the sending of questionnaires to participants directly is currently on hold.
Information is also collected via the participant's consultant for the duration of the study. The current end date is 30 September 2028.
Why get involved?
By participating, you will help us build up the amount of data we have for analysis. With more data, we will be able to reach better-informed conclusions on the long-term safety of the biologic treatments.
If you are not involved in the study but would like to be, please speak with your rheumatology team to see if you are eligible to join.
If you are already involved in the study and have some further questions, please contact the team at firstname.lastname@example.org.
You may find the patient information sheet (PDF, 159KB) useful if you would like to find out more about what participating in BSRBR-RA involves.
Linking the data
If you are a participant in the BSRBR-RA, the data you have provided to us regarding your arthritis is extremely important and has led to many publications in medical journals (details of which can be found here).
The data that we have already collected from our participants and their consultants can be enhanced by linking to other national databases such as the Hospital Episodes Statistics (part of NHS Digital) – this means that we can be informed of adverse events and hospital admissions that we might have previously not known about for participants on our study.
If you have signed version 8 of the consent form dated 19/10/2016 (or any subsequent version of the consent form) then you will have full details of what is involved in linking to other national databases from the participant information sheet. If you joined the study before this time and signed an older version of the consent form then you may have further questions regarding this linkage, as the participant information sheet did not contain as much detail to explain what is involved.
To find out more about these changes please read the updated information sheet (version 8: 19/10/2016 or any subsequent version) - the current version can be found here, or you can request a copy from your rheumatology team or from the BSRBR-RA study team directly (0161 275 1652 / 0161 275 7390, email@example.com).
If you have any further questions about this please contact the BSRBR-RA team who will be happy to advise. Please remember that you are able to withdraw from the study at any time should you wish to do so, and this will not affect your standard of care in any way. Thank you once again for your participation.
How is the study progressing?
The data that is sent to us by the patients and consultants is analysed by the research team, who write up their findings, which are then published in research journals. You can read a summary of what has been found out so far in a journal article, The BSRBR-RA at 15 years by Hyrich et al.
Support for you
There are a number of organisations that offer support to those suffering with arthritis and other musculoskeletal conditions.
- The National Rheumatoid Arthritis Society (NRAS) is an organisation whose aim is to provide information and support for people suffering from Rheumatoid Arthritis, along with their family, friends, carers, and anyone with an interest in RA. They have a freephone helpline at 0800 2987650.
- The British Society for Rheumatology (BSR) is an organisation supporting health professionals working in the field of arthritis. Their website also has a section with information for patients.
- Arthritis Research UK is a charity which campaigns on behalf of people with arthritis, and funds research in to making a difference to the lives of people with arthritis.