When did you start recruiting for the RA register?

Rachel, Research Nurse at North Middlesex University Hospital NHS Trust

Our site has been recruiting to the BSRBR-RA intermittently since 2003 but the Covid pandemic, the introduction of the online database and the need for regulatory alignment caused a pause of three and a half years. We finally got the go-ahead to recruit again in Autumn 2023 and have been pleased to have some success recruiting since then. On a personal note I was working on the Register in a previous role in the early 2000s so I was delighted to make its acquaintance again in this role.

How do you encourage patients to sign up?

For me it’s all about communication. I find that once they understand the purpose and aims of the register, they are often keen to participate as they want to contribute to research and help future patients. To be eligible to take part they will have failed previous treatments so they often seem to instinctively understand the potential benefits of the register in helping to inform future care guidelines.

Do you have any challenges with recruitment?

As is so often the case the main challenge is lack of resources. It can be difficult to identify eligible patients when the clinical team are so busy with competing priorities. I identify patients independently but it takes more time which can be a challenge to find, especially as I only work part-time. Another obstacle can be finding a private space to speak to a patient, either in person or on the phone, to ensure their privacy and dignity.

What do you find the most rewarding part of contributing to the register?

I love the continuity and following patient’s journeys. I’ve always met or spoken to the participants so I feel personally engaged with their stories and am always pleased to find a patient is responding well to treatment or sorry to find they’re struggling. This is one of the huge benefits of working in the care and research of long term conditions. From a personal perspective it’s enormously rewarding to know I’ve contributed to the same project over 20 years especially when I consider the impact on the clinical care of so many patients. The BSRBR-RA is made up of a huge team of clinicians, researchers and patients and I find it very fulfilling to be a tiny part of that.

What are your top tips to others?

• Use the opportunity for postal consent. Even if I can be there to meet patients in clinic there’s often a lack of time and privacy. I ring potential patients first and explain the register to them and only send them the PIS and ICF if they’ve indicated their willingness to receive them. It’s a good opportunity to explain the project and answer questions. As I also make sure a stamped addressed envelope is included for them to return the ICF it’s also a helpful way to make sure stamps are used judiciously!
• I also make sure to log into the database regularly and keep an eye on any Follow Ups or data queries as it is very easy for them to pile up if I take my eye off the ball even briefly.
• But overall my top tip would be to be proud of working on the BSRBR-RA, it really is a privilege to be part of something which so enhances progress towards real life quality outcomes for patients

Rachel is a Research Nurse at North Middlesex University Hospital NHS Trust  

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