BSRBR 10th Anniversary brochure - The British Society for ...

BSRBR: a cause for celebration
In 2001 BSR launched the Biologics Register to monitor the safety and efficacy of a new
generation of therapies for rheumatic diseases. Thanks to the collective endeavours of
rheumatologists and allied health professionals across the country, it has become a research
model respected worldwide. To mark its first decade, this report celebrates its achievements
and continuing importance for the future.
Professor David Isenberg, chair of the BSRBR Steering Committee from
2006 to 2011, discusses the virtues of the Register as a model for others.
2 | BSRBR 2001-2011
To me, the Biologics Register is the jewel in
the BSR’s crown, a wonderful creation that
led the way nationally and showed the
Society and its members were ahead of
the game.
One reason BSR started the Register was to
make sure everything was above board
when it came to studying the effects of
these exciting new biologic agents. When
corticosteroids were introduced in the late
1940s, for example, it wasn’t unknown for
those with a vested interest to phone up
the editors of journals who had published
articles detailing their side-effects and
harangue them for damaging the new
drugs’ reputation.
BSR and its Executive Committee wanted
to get it right on drug safety and Professor
Gabriel Panayi, the Society’s President at
the time, deserves great credit for driving
us on to create the Register.
With almost 20,000 patients enrolled, it is
now the world’s largest biologics registers, a
model for others to follow. That in itself is a
cause for celebration. Importantly, the way it
is set up has the full approval of the National
Institute for Health and Clinical Excellence
(NICE), because of the benefits it brings to
all parties involved.
Pharmaceutical companies pay for the
running of BSRBR and in return receive
relatively cheap, long-term follow-up data on
the drugs they produce. BSR enjoys the
kudos for the work it has done in
establishing and overseeing the Register.
The Arthritis Research UK Epidemiology Unit
at the University of Manchester has the
pleasure of publishing many articles in
learned journals based on researching
data collected by the Register.
A glass wall separates the parties involved.
Drug companies pay BSR to run the Register
rather than funding it directly. Researchers in
Manchester, for their part, submit their
papers for comment to the drug companies
and the BSRBR Steering Committee before
sending them to journals for publication.
Any issues raised are then fed back to the
committee. It passes on genuine concerns
for Manchester to answer. This process
allows everyone to have their say and
completes the audit loop.
The Register has evolved a great deal over
the past 10 years and a new register for
ankylosing spondylitis is about to start
recruiting patients. What has been most
gratifying for me is that BSR has been seen
to be going places and has set a standard
of excellence that is recognised worldwide.
When I am at conferences abroad, it is not
uncommon for delegates to come up and
tell me that we have got it right.
Clinical trials give an indication of whether
a new drug will be beneficial, but their
samples are usually small and to a degree
self-selecting. Often they don’t take into
account a patient’s full medical history.
BSRBR, though, tells you what is going on
in real life where patients have RA but may
also have other conditions too.
That makes BSRBR a more powerful
instrument for researchers than clinical
trials. It has allowed us both to identify
unexpected benefits of anti-TNA drugs
and to allay fears about these drugs.
The Register has also identified the
unexpected such as the small number of
patients who have developed psoriasis as
a result of their treatment.