16 January 2024

York doctors have achieved a global first by participating in a clinical study helping patients with a rare condition.

Researchers working at York and Scarborough Teaching Hospital NHS Foundation Trust were the first to recruit a patient for the global research study named AvacoStar. 

Patients are now able to take Avacopan which is given to patients with a disease called ANCA-associated Vasculitis (AAV).  AAV is a type of inflammation of the small blood vessels, most often affecting the kidneys and the lungs. Patients will be proposed to enrol in the study which has been supported by the NIHR Clinical Research Network (CRN).

Dr Keith McCullough, a Nephrologist from York and Scarborough Teaching Hospital NHS Foundation Trust, said: “We are pleased to be able to offer our patients in York the opportunity to participate in this important international, observational study.  It will assess the real-world impact of a newly available tablet treatment for vasculitis, which is a rare auto-immune condition.

“The condition can significantly impact long-term health and existing effective treatments can carry a significant burden of side effects and health complications.  International collaboration has been crucial in creating large, good quality studies to provide an evidence base for the best treatment strategies for this condition.”

Reflecting on the achievement, Marthe Ludtmann, Commercial Research Manager for the York and Scarborough Teaching Hospital NHS Foundation Trust, explained: “We are delighted that Dr Mccullough and the Research and Development team have recruited the first global participant to the AvacoStar study.  It showcases the excellence of our team and demonstrates how reactive and responsive we are as a trial site to commercial companies.”

York patient Mary Steel explained that taking part in the AvacoStar trial was an easy decision.  Mary has been diagnosed with the condition affecting her kidneys since 2021.

“If it helps me to improve my condition and it helps others in the future then I want to be able to do that, improve and get better and help others,” she said.

Siobhan Sutton, Renal Research Nurse at York and Scarborough Teaching Hospital NHS Foundation Trust, explained without Mary’s help the delivery of research within renal medicine would not have been achieved.

“We were delighted to recruit the first global participant to this study; however, this wouldn’t have been possible without the engagement and enthusiasm of our patients.

“It was a pleasure to meet with Mary and hear how passionately she feels about taking part in research. Being able to spend time with all our patients, to hear their stories and understand why taking part in research is important to them, is extremely rewarding,” she said.

Professor Alistair Hall, Clinical Director, from The National Institute for Health and Care Research of Yorkshire and Humber (CRN), explained:  "Patients with diseases that are termed ‘rare’ are nonetheless confronted with major challenges and concerns, that can include the absence of new treatment availability and the absence of opportunities to take part in research that might have a life-changing impact for them and others.

“As the first participant in a multinational study, Mary is acting as a leader for others who will subsequently join and so she should be rightly honoured and thanked.  Health research is entirely dependent on such kindness. I therefore extend my gratitude on behalf of the Yorkshire and Humber Clinical Research Network, while also applauding the role of the York team in this valuable endeavour.”