Crunching the numbers in RA and AS

The Irish Society for Rheumatology Spring Meeting 2023 featured a talk by Dr Michele Doran and Prof Barry O’Shea, both Consultant Rheumatologists at St James’s Hospital in Dublin, who delivered a presentation on the topic of registries in rheumatoid arthritis (RA) and ankylosing spondylitis (AS). 

Prof Doran gave the attendees an overview of the Rheumatoid Arthritis Biologics Registry of Ireland (RABRI), including its structure and governance and an overview of how data is stored. RABRI was established in Ireland in 2015 and is designed to document information regarding patients with RA who have started on a new biologic therapy, including biosimilar and targeted synthetic disease-modifying antirheumatic drugs (DMARDs) in participating centres in Ireland. Prof Doran spoke to the conference about how it is hoped to enrol more patients, and also to recruit more doctors to participate in the steering committee, and perhaps run the database at some point in the future. “For evidence-based medicine, observational cohort studies are very important for generating real-life data in large numbers of people who have not had to fulfil strict inclusion criteria before they can be enrolled,” said Prof Doran. “It’s a real-life, real-world experience… the aims are to document any patient with RA who is commencing a biologic therapy. It doesn’t have to be their first biologic; just any biologic therapy they are starting. We monitor response over a period of five years and follow-up at regular intervals during that time, where we can record any adverse events, comorbidities, and anything else that might be of interest.”

Prof O’Shea discussed the Ankylosing Spondylitis Registry Ireland (ASRI), which was established in 2013. At this time, 12 hospitals have contributed to the registry and each centre is led by a local lead consultant rheumatologist, who approaches patients for participation. 

Prof O’Shea explained how the system works for clinicians and provided an overview of publications and research led by ASRI. To date, there are data from 885 patients on the ASRI. He charted the development of the registry since its establishment and told the attendees: “The data we have built-up is tremendously useful but some data is now approaching 10 years old, so some of it is becoming redundant,” said Prof O’Shea. “Our medication sections are becoming out of date with the advent of new therapies, JAK inhibitors and biosimilars. 

“For this cohort to be useful, it needs to be kept alive,” he told the conference. “It is also of use to young rheumatologists, so people need to recruit into this database and RABRI… but we also have a PsA [psoriatic arthritis] database that is sitting there waiting for someone to take it and run with it — SpRs need to be encouraged to start their research career with this cohort, and it’s the same for RABRI. There are databases sitting there waiting, but they take a bit of work from us as a community to maintain and to keep them active. But we have seen examples of what can be done with these databases, and it’s a huge opportunity.”