BSR’s rheumatoid arthritis register has been in operation for more than 18 years to track the progress of patients who receive biologics. This helps to monitor the safety and effectiveness of treatments over the long term. The register is run by the Versus Arthritis Epidemiology Unit at the University of Manchester. Anna Roynon-Reed is the Research Delivery Senior Team Lead at Aneurin Bevan University Health Board. Here she tells us how her team recruit to the register and why it’s so important.
When did you start recruiting for the RA register?
When I started in my role five years ago, the RA register hadn’t been active for a few years because of workload. As a research department, we wanted to enable colleagues to do research without giving them more work, so we picked it up.
Now we have good links with the rheumatology department, we attend meetings and research is always on the agenda. We discuss how all our studies are going, remind everyone of the criteria and what we’re looking for.
How do you recruit patients?
We remind the rheumatology teams regularly and we’re proactive in screening patients ourselves. Most of the recruitment happens by post and we did it this way even before COVID-19. We identify patients from our lists and call them to talk them through the consent form process. We send them a postal pack which includes the consent form, baseline questionnaires and our contact details. A week later we follow up with them to see how they’re getting on with filling it in and it works well.
We also work alongside the biologic education nurse. We used to pick up a lot of patients at the face-to-face education clinics. Now that it’s done remotely, we actively screen the patients from that clinic.
Why are registers important?
We’ve seen such developments in rheumatology. People often think that biologics have been around for a while so registers aren’t needed, but we can’t be complacent that biosimilars will work in the same way. It’s important that we collect this data to ensure the ongoing safety of patients.
How do you encourage patients to sign up?
Overall, patients want to take part. The only thing that limits them is the time to fill in the paperwork so that’s why the reminder phone call and supporting them to complete it is vital.
I use Post-It notes on the forms to make it easier for patients; showing them where they need to put their initials and where to sign. I label which parts they just need to read and which parts they need to return. Everyone’s time is precious, so I want to make it as easy as possible for patients.
Do you have any challenges with recruitment?
The biggest limitation now is that a lot of prescriptions have gone onto WP10 prescribing. This means patients aren’t going to the specialist nurse for education anymore but are instead getting some information from the consultant with the prescription. Sometimes this means patients can be missed from the registers. We’re working closely to see how we can resolve that.
What are your top tips to others?
- Build up relationships with the rheumatology department so they know who you are, what research is available and what patients you’re looking for. Give them gentle reminders
- Support your patients with postal consents. It needs to be a two-way process from start to finish. Making those postal packs easy to complete is key