05 April 2023
We spoke to Jeanette Hall, a research Nurse and JIA (juvenile idiopathic arthritis) register champion at Sheffield Children’s Hospital, about how and why it’s important to recruit the JIA register.
Versus Arthritis and BSR were already carrying out independent studies at hospitals throughout the UK to look at the safety and effectiveness of biologic and biosimilar treatment for JIA.
These studies combined created the UK JIA Biologics Register – the world's largest group of children and young people involved in research about JIA.
Jeanette tells us why working closely with her team and tackling obstacles they faced helps them to continue to recruit to the register.
“I started research around seven years ago and I’m the lead nurse that completes the questionnaires, consent forms, data entry and all aspects of recruiting patients to the register.
“I started off with around 90 patients and most of them have transitioned into the adult clinic now. I’m glad that we were able to recruit them to the register to try and make their rheumatology journey better for the future.
“Many other hospitals have a different approach to putting patients on the register. For example, in the adult clinics, they had enough staff to sit in clinics and recruit patients. Unfortunately, we didn’t have the capacity of staff to do this, so we adopted a different method that still proved successful for us.
“Nurses who work in the rheumatology speciality compiled a weekly summary of children who were starting a new drug for JIA. Otherwise, I would have had to look in hundreds of rheumatology patients’ notes, find out if they were eligible, when they were next in the clinic and go and consent them. This collaborative way of working really helped us in saving time.”
Jeanette talks about her passion for raising awareness in JIA and how she believes the JIA register will help change the quality of life in young people.
“A lot of my patients have been through quite a lot of medication before they find the one that works for them. To have this enormous study that can match genes, blood types and DNA to a drug which will work for them straight away is amazing and life-changing.
“I’m really invested in the register as I think it’s quite exciting and I do most of the raising awareness within my hospital. There are hundreds of patients, and I wouldn’t be able to look through all their notes every week which is why communication is key within the rheumatology team.
“I sit in on the MDT meetings once a month and they’re also really invested in research and this is embedded through the whole rheumatology team. Everyone is aware of what is happening, and we all have one goal – putting patients first and ensuring we deliver great patient care and outcomes.”