Data is a key component of any medical decisions clinicians make about patients; it informs patient decisions, helps monitor the long-term effects of different treatments and support the publication of cutting-edge research. That’s why the society operates four registers that help generate vital evidence on patient safety as well as the efficacy of rheumatology treatments.
What are the registers?
Research Contracts Project Manager Ross Matthews heads up the team in charge of the registers. He says: "The registers look at what happens when patients with a particular condition receive a certain treatment. We’re monitoring the impact of treatments on patients in the longer term, seeing how outcomes differ depending on where people live, how long they stay in work and other impacts on patients, such as their mental health. We’re effectively building a big bank of research knowledge."
The first register was developed for rheumatoid arthritis and started in 2001. The data is overseen by a team at the University of Manchester and now has over 30,000 study participants in the research database. Ross explains: "The more data we get, the better informed and the better conclusions we can make on the long-term safety of these medicines."
The society has also developed registers in juvenile idiopathic arthritis and ankylosing spondylitis, with a team at the University of Aberdeen overseeing the psoriatic arthritis register which was launched last year.
The registers have already contributed to knowledge on the safety and efficacy of biologics in long term use through real world data that can only come from this post marketing surveillance work. They remain vital for improving the future of rheumatology treatment as new formulations and classes of treatment are developed.
Why are the registers important?
Ross explains: "The registers are really important because they’re tracking what happens in the real world when patients take these drugs. You can make sound judgements on clinical practice going forward or change a treatment lifecycle for someone, but we can only make those changes in rheumatology if we have collected that information and converted it to knowledge via scientific publication."
How do the registers work?
Patients who are part of the registers are asked about their condition, how they're feeling, any drug changes and any hospital referrals or admissions. The rheumatology team at the hospital will also complete questions about changes to treatment, if the patient condition has got better or worse, and any possible side effects they may have experienced.
We currently rely on the goodwill of medical professionals, nurses and other clinical staff such as pharmacists to enrol their patients.
Ross adds: "We do recognise that the process is time-consuming, so we are looking at other ways to help such as through the implementation of a new online data portal for the rheumatoid arthritis register. We really hope that more members recognise the benefit of contributing to these registers and the positive impact they can have on the care of future patients."
So far there have been 106 publications that have used registers data, covering topics like the relationship between depression and biologic treatment, severe fatigue and serious infections. The team encourages people to get in touch if they're doing a research project, as access to the data in our registers could really help. It’s a valuable resource and it’s there to be used.
The registers are becoming even more valued as new treatments like biosimilars come onto the market. "We’re moving on dramatically in the treatment of rheumatology conditions," says Ross. "People have been on the original biologics for a long time, so we have more data. Now with these relatively new treatments we need more data on them to see how effective and safe they are in the longer term. These are things we can’t answer without the data from our registers."
Ross concludes: "There are lots of areas where the registers are really useful. With more data we could be changing clinical practice for the better in the future."
Read more about our registers here.