BSR Biologics register and what it does
The British Society for Rheumatology Biologics Register (BSRBR) tracks the progress of patients with severe rheumatoid arthritis (RA) who are receiving biologic agents, monitoring the safety and effectiveness of these treatments over the long term.
This unique research project has participation across the UK with many BHPR members contributing by completing questionnaires for their patients on the Register.
The project is coordinated through a BSR project steering committee, chaired by Professor David Isenberg and a Biologics Register Coordinator, Ms Nia Taylor (email: ntaylor@rheumatology.org.uk).
Trish Cornell (trish.cornell@poole.nhs.uk) is the Nurse/BHPR representative on the Steering Committee.
Ankylosing spondylitis register
A major step in the direction of establishing an ankylosing spondylitis register has been achieved. With the help of the National Association of Ankylosing Spondylitis (NASS), the pharmaceutical company Abbot and funds from the BSR itself, a sum of £30,000 has been raised which has enabled us to appoint Dr Lorna Layward to the role of Register Development Officer.
Lorna’s role will be to seek funding for an AS Register, identify the research questions to be answered and find a centre to run the Register.
If you are interested in finding out more, please email
Nia Taylor.
NIHR Clinical Research Network
We are delighted to tell you that BSRBR has finally been accepted on the National Institute for Health Research (NIHR) Clinical Research Network (CRN) Portfolio. The inclusion of the study in the NIHR CRN Portfolio allows access to NHS support in England. Our UKCRN ID number is 7302.
To find out more, contact the
Register Team
in Manchester.
Web-based data collection
We are starting to plan for a web-based data collection system to replace the paper-based questionnaires. The advantages will include a reduction in time spent in entering data both by centres (through use of pre-entered fields, drop-down lists, etc) and by the Register team at Manchester and fewer errors since validation rules will be incorporated in the web-based forms.
If anyone is willing to pilot this, please contact
Nia Taylor.
Outstanding death data
The Register is notified by the NHS Information Centre (formerly the Office for National Statistics) of all deaths of patients on the Register and receives a copy of the death certificate. Unfortunately, we do not receive information on whether the patient was receiving a biologic drug at the time of death.
Without these details, it may be necessary to exclude these important patients from analyses, thus losing all of their information collected to date.
Over 1,200 deaths in the anti-TNF cohort have been reported to the BSRBR. We have a problem with missing death information in around 200 of these patient deaths.
We realise how difficult it can be to obtain this information when a patient has died. If you have received a letter requesting additional information on patients who have died and are having trouble accessing data for any reason please contact the
Register Team
in Manchester.
All BSRBR follow-up extended to 2013
We have extended the follow-up of all patients on the Register to 2013. This means that annual follow-ups will be sent out after five years of follow-up asking about any changes in therapy and any serious adverse events that have occurred in the past year.
We are only interested in those events that fulfil our definition of serious and those non-serious adverse events that led to discontinuation of a drug.
Publications
For the most recent BSRBR publications list please visit the
BSRBR website
and click on 'Publications'.