A lupus patient at the Manchester Royal Infirmary (MRI), part of Manchester University NHS Foundation Trust (MFT) was the first UK recruit to the newly launched NIHR IMID BioResource – a national database of inflammatory disease patients willing to participate in research.
The NIHR BioResource is a network of 13 centres which connect researchers to suitable volunteers – both with and without health conditions – available to be recalled for future research.
The Immune Mediated Inflammatory Diseases (IMID) BioResource makes up one of its common disease areas, and recruits UK patients with IMID conditions, including rheumatoid arthritis, psoriasis and connective tissue diseases such as lupus.
These conditions affect a large proportion of the UK population – with rheumatoid arthritis affecting over 430,000 UK adults alone – significantly impacting their quality of life.
Helen Nicholds, 34, from Manchester, joined the NIHR IMID BioResource during her routine check-up at MRI’s Kellgren Centre for Rheumatology. She said:
“It’s pretty exciting and I’m interested to see where I can play a part in future research. I’ve participated in a couple of studies before and this wasn’t much different from my usual consultations, just an extra questionnaire about my condition and a blood sample.
“I was first diagnosed with Sjogren’s syndrome about ten years ago. I had check-ups every six months but unfortunately it developed into lupus about four years ago and started to affect other parts of my body
“Lupus is so complicated, and doctors are still learning things about it. If there’s anything I can do to contribute to that, help other people or even myself in the future, I’m really eager to do that.
Helen works as an optometrist, though is having to shield during COVID-19 due to being at higher risk due to her condition. She added:
“My profession is science-based, and with having an auto-immune condition I’m always interested in new scientific developments. Hopefully the NIHR IMID BioResource will make it easier to be part of this and new treatments.
“Care at the Kellgren has been excellent and the nurses and my consultant Dr Parker have been great. It’s been quite challenging trying to find out the right medications and treatments for my condition, but they’ve always given the best care and we’ve finally found something that seems to be working for me.
“The staff see so many patients here but it’s always nice that they seem to know who I am and it’s a great environment.”
NIHR IMID BioResource is a collaboration of northern NIHR Biomedical Research Centres (BRC) – Manchester, Leeds and Newcastle. MFT is the lead centre for IMID BioResource, supported by The University of Manchester, NIHR Manchester Biomedical Research Centre (BRC) and the NIHR Manchester Clinical Research Centre (CRF). The IMID BioResource is funded through the NIHR BioResource.
Volunteers provide a small blood sample and health and lifestyle information, which is stored in the NIHR BioResource national database which researchers can subsequently use to find potential study participants.
Professor Ian Bruce, Consultant Rheumatologist at the Kellgren Centre, Director of the NIHR Manchester BRC and Chief Investigator of the NIHR IMID BioResource, said:
“As part of our “One Manchester” approach with researchers working across the Kellgren Centre, Manchester BRC and The University of Manchester, Manchester has become a leading research centre for inflammatory conditions. We’re delighted for Manchester to be the lead site for the NIHR IMID BioResource and to welcome the first of what we hope to be many volunteers.
“We’re already working with colleagues across the UK, including NIHR centres in Leeds, Newcastle and Cambridge, to widen recruitment. Together we can help connect researchers to willing volunteers and build a national network to support pioneering research.”
Consultant Rheumatologist and Medical Director at NIHR Manchester Clinical Research Facility at Manchester Royal Infirmary, Dr Ben Parker, guided Helen through her sign-up to the NIHR IMID BioResource. He added:
“Helen has been one of my patients for the last seven years and her evolving rheumatic disease has been challenging to manage and a great example why research is so vital. We’re really grateful to her for volunteering for the NIHR IMID BioResource.
“Our team of research nurses, clinical research practitioners and study coordinators have worked incredibly hard to get this underway, and we hope other patients, both at the Kellgren Centre, and across the UK, will join her in contributing towards future research.”