Patient registries are a powerful way to monitor a condition, help us better understand responses to treatment, and drive forward best practice. We operate four registries including the psoriatic arthritis (PsA) register, run by the University of Aberdeen.
The team at Nottingham University Hospitals NHS Trust's recruited 110 patients to the register over the last three years. We spoke to rheumatology research nurse Marie-Josèphe Pradère about the team’s success.
Why are registries so important?
When I started, there were few PsA trials of any sort and disease specific drugs weren’t yet marketed. Now that drugs have been developed for PsA, it's important to assess if and how well they act on the different manifestations.
For example, we now know that there are some which work better on skin and others better on the joints. The registries show us what’s happening, so we can make better judgements.
How did you start recruiting to the register?
To begin with it was patients I already knew. We’d kept records of PsA patients on trials for the national repository, so we contacted those patients first because we knew they were open to research.
How has the pandemic affected recruitment?
We had two studies running where postal recruitment was allowed, so we’ve just changed the way we work to keep things running along. A lot of the biologic counselling clinics are still being run by telephone. It means someone’s physical measurements haven’t been done for a while, so you can’t get them at the baseline visit. With all the best intentions in the world, we recruit even if we’re missing a little bit of data, because we know we’ll see them soon.
What else has helped with recruitment?
One of the specialist nurses that works on the PsA register in Yorkshire created crib sheets with diagrams of joints and nails. We send copies of these to patients so that we can have a meaningful consultation without it being face to face.
How do you go about talking to patients about joining the registry?
Generally, I’ve always tried to talk to them about it in clinic. If not, whoever is seeing them will ask the patient if they agree to be contacted by a research nurse. Then we telephone them to explain and if they don’t understand, we'll invite them in for a visit.
How have you managed to get colleagues onboard?
Our rheumatology team is happy for patients to be recruited, but of course everyone is busy. Our presence in clinic is a silent reminder because we're running around dressed in red! But we also meet as a research team to look at lists and we work with colleagues to flag potential patients.
What are your top tips to others?
- If you have a biologics coordinator, use them. They’re the people who know the diagnosis and will be able to alert you quickly
- Every time you have a team meeting, remind everyone about recruitment
- Have baseline packs made up in advance containing all the relevant forms like eligibility, consent, information sheets and prepaid envelopes for patients – it saves a lot of time
- Carry stocks of blood forms because if the patient hasn’t had a recent blood test, you can take them yourself. If they need routine bloods done, we take those too. It saves the patient another trip to the hospital.