BSRBR|Newsletter - The British Society for Rheumatology

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BSRBR|Newsletter Continued from page 1 . . . economic analyses. This applies to first-line use of the drugs and even more so to sequential use following the failure of a first anti-TNF. BSRBR has produced a wealth of observational data on real-life use of anti-TNF in the NHS. BSRBR patients tend to have long disease duration with well-established disease, failing on many conventional DMARDs (usually many more than the two required by NICE). As such, they may not be ideal to study efficacy. NICE health economic analyses are driven by the change in Health Assessment Questionnaire (HAQ), and in patients with established disease, this is governed by factors other than disease activity, such as damage to joints. Therefore the ability of anti-TNF to influence the HAQ in the BSRBR population is much less than in patients with a more recent onset of RA. We have used this as an argument to show that as time has gone by, rheumatologists are using biological drugs in patients with earlier disease that is proving resistant to conventional DMARDs, and where data shows that these patients will respond better than the BSRBR patients. Colleagues at the arc Epidemiology Unit in Manchester have performed helpful analyses, sometimes at short notice with tight NICE timetables with occasional late-night telephone calls before Appraisal Committee meetings. With health economists in Sheffield, they have performed analyses with change in DAS28 as the driver of the model, suggesting that anti-TNF was cost-effective in treating RA, despite the limitations of the BSRBR data. This alternative approach to a health economic analysis, as well as other evidence, was instrumental in producing sufficient doubt in the veracity of the original NICE health economic models to allow access to a first anti-TNF. University of Manchester update Cohort recruitment update BSRBR recruitment to the anti-TNF and the comparison cohort for patients with RA is complete, with an overall total of over 16,000 patients. More importantly, we are extending the follow-up and will continue to collect data from you and the UK national registers for cancer and deaths for all of these patients until at least September 2013. Rituximab (RTX) recruitment is increasing and by end of August we had registered 442 people. We aim to recruit 1,100 RTX treated patients to allow us to thoroughly analyse the risk of serious infection so please continue to register any new rituximab patients with us. Other cohorts that remain “open” are the anakinra cohort and patients who have a diagnosis other than RA, PsA or AS starting any anti-TNF therapy. Figure 1: Rituximab recruitment prediction (cohort requirement: n = 1100) BSRBR data showed that a second anti-TNF is effective in patients who have had an unsatisfactory response to the first anti-TNF, and given some insights into which sub-populations of patients may gain the best benefits from a second anti-TNF. This evidence will be used in ongoing negotiations over access to sequential anti-TNF therapy. The NICE approach to health economic modelling is to map the change in HAQ onto a quality of life score, and then calculate cost effectiveness from this. BSRBR analyses have shown that this approach may underestimate improvements in quality of life when they are measured directly in RA patients, and this observation supports the need to improve current NICE modelling. One of the greatest concerns over current access to anti-TNF expressed by patients and professionals is the hurdle of a DAS28 of >5.1 in order to have access to anti-TNF. There are many clinical situations in which this is inappropriately high, such as in patients who need oral steroids to maintain disease control. An analysis of BSRBR data, performed with the considerable assistance of Kimme Hyrich, Mark Lunt, and Deborah Symmons, showed that patients with a baseline DAS of less than 5.1 did just as well as those with a DAS28 of >5.1, suggesting that it would be just as cost-effective to use the drugs in patients with less active disease than is currently the case. I am pleased to be given the opportunity to show colleagues that as well as the obvious triumphs of the BSRBR, there is other activity that helps to support ongoing negotiations with NICE. I have always found my colleagues in Manchester to be extremely helpful in assisting our efforts to ensure that the most appropriate RA patients will get access to biological therapies. I am confident that they would be equally helpful with other colleagues who may have ideas for analyses of BSRBR data. Dr Chris Deighton BSRBR Steering Committee vacancies 2009 The BSRBR Steering Committee oversees the operation of the Register and is directly responsible to the BSR Executive. It meets four times a year, normally in London. The Committee has responsibility in particular for: • safeguarding patient safety • ensuring financial and contractual obligations are met; and • ensuring research objectives are being met. There is a vacancy for a consultant representative on the committee for a three-year term from November 2009. The representative would be expected to have a particular interest in the scientific output (analyses and publications) of the register. Applications for membership (on a nomination form) are considered by current members of the Steering Committee which makes nominations to the BSR Executive for appointment. To find out more or request a nomination form, please contact BSRBR Co-ordinator Nia Taylor (DL: 020 8742 0905, ntaylor@rheumatology.org.uk). 2
BSRBR|Newsletter www.rheumatology.org.uk Conference report BSRBR at Rheumatology ‘09 The BSRBR was well-represented at BSR’s conference at Glasgow’s SECC in April this year. The conference attracted around 2,200 attendees over four days and feedback from the online evaluation survey was very positive; 95% said they would recommend the conference to a colleague, 81% said that the conference is a key date in their professional calendar and 91% said that they learnt new things at the conference. There was a BSRBR stand which was manned by staff from the University of Manchester Register team, Pauline Whitelaw and Nia Taylor. Seven abstracts from the BSRBR were presented: one oral presentation and six posters. The usual lunchtime open BSRBR session was held on the Wednesday of the conference. This session attracted a record 300 delegates, so that the packed lunches ran out and more had to be ordered! Principal Investigators, Professor Deborah Symmons and Dr Kimme Hyrich, gave an update on the BSRBR, including rituximab recruitment, adverse event data and extended follow-up; Dr Andrew Keat presented the plans for developing a new register for ankylosing spondylitis; Debbie Smith gave a round up of the latest news on the NICE appraisal of TNF alpha drug switching and Professors David Isenberg and Barry Bresnihan talked about the way forward for the BSRBR, including collaboration with other European Registries and electronic data capture. BSR’s events team have recognized the popularity of the BSRBR’s lunch time meeting and, concerned that attendance might be restricted in 2010, when conference will only run over three days, they have included the BSRBR session in the main programme. This means that it will benefit from advertising in the main programme from September and the session will last for an hour and a half instead of 60 minutes. So put the dates in your diary: the conference will be held at the ICC Birmingham between 21–23 April 2010 and the BSRBR session will be on Thursday 23 April 2010 from 13.30 to 15.00 hours. UK CRN We are delighted to inform you that BSRBR has finally been accepted on the portfolio. Our UK CRN ID number is 7302. Over the next few months we will be uploading all the accrual data for 2008/2009, which will be co-ordinated centrally from the BSRBR office. In addition, we will provide figures of registrations prior to 2008 to the portfolio. If you have any immediate questions regarding this, please do not hesitate to contact the office – biologics.register@manchester.ac.uk. We will be in contact with you soon regarding your accrual data to date. ➜ Change of contact Pauline Whitelaw is currently taking six months unpaid leave from her post as Policy and Projects Administrator, returning early February. In her absence please contact Katie Fitzgerald at kfitzgerald@rheumatology.org.uk BSR members’ survey results The most recent membership survey carried out by BSR in May 2009 asked members for their views on BSR’s new aims and strategic plan. Two questions about the Society’s activities were included. As contributors to the BSRBR, you will no doubt be pleased to know that the Register scored very highly in both questions. • 46% rated the Register as ‘very important’ – the highest proportion for any activity. • The average rating of the Register was third highest of the 16 activities listed, behind Clinical Guidelines and Annual Scientific Conference • 51% of responders rated BSR’s performance in relation to the Register as ‘very good’ (5 on scale of 1 to 5) • The only activity which scored a higher percentage of ‘very good’ was Clinical Guidelines • The average rating of the Register was the highest of the 16 activities listed, above that of the Annual Scientific conference, Rheumatology Journal and Clinical Guidelines (the next three highest ratings) 3
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BSRBR|Newsletter - The British Society for Rheumatology

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