The Renal research team at Leicester’s Hospitals have recruited the first worldwide patient to a clinical study of a new drug treatment for kidney disease.
The Leicester team are conducting a number of clinical trials in different types of kidney disease and have recently started a study examining a new treatment for IgA Nephropathy. This is a chronic disease that commonly affects young people and can lead to kidney failure and the need for dialysis or a kidney transplant. IgA Nephropathy develops when antibodies, called IgA1, deposit in the fine filters of both kidneys, resulting in inflammation and scarring of the kidneys.
The study is assessing the effectiveness and safety of a new drug called Fostamatinib which is designed to reduce the inflammation and scarring resulting from the IgA1 being deposited in the kidneys.
The first worldwide participant, Scott Jennings from Earl Shilton, was recruited to the study on Wednesday 3rd December at Leicester General Hospital.
Scott said, “After my initial diagnosis a couple of months ago, my consultant put me forward for the study. The research team called me and asked if I’d be interested.
I’m only 33 and I’ve been healthy my whole life so to get my diagnosis was a shock, especially with it being asymptomatic.”
The research team is led by Dr Jonathan Barratt, Reader and Honorary Consultant Nephrologist at Leicester’s Hospitals and the University of Leicester.
Dr Barratt commented, “It is very satisfying for Leicester to be the first centre in the world to recruit to this study, as we were involved in the laboratory studies that showed for the first time that Fostamatinib might be a new treatment for IgA Nephropathy.”
Back in March 2014,Dr Barratt and the Leicester IgA Nephropathy Research Group hosted the first National IgA Nephropathy Patient Information Day at the National Space Centre. The proposed study was presented to the patients and families who attended and that discussion was incorporated into the research team’s approach.
Dr Barratt said, “This proved to be a valuable opportunity for people with the disease from across the UK to learn more about the condition and to discuss their experiences with the doctors, health workers and research scientists who are working to find the cause of IgA Nephropathy. Kidney Research UK and the British Kidney Patients Association supported the day and were able to talk directly to our patients about their needs and the important work that we and the charities are doing. We found it invaluable to listen to everyone’s experiences, concerns and suggestions and we will continue to incorporate that perspective in our work.”
Sandra Currie, Chief Executive at Kidney Research UK, states: “Kidney Research UK continues to work closely with patients as we expand our patient involvement programme. We believe research is only worthwhile if it makes a real difference to patients and their families, and as such we were delighted to have supported the IgA Patient Information Day.”
Scott is still getting used to his diagnosis and what that means. “I am working towards a biology degree and am still furthering my career so it’s been helpful towards understanding what is happening and what may happen.”
About being involved in a clinical trial and of being the first worldwide participant, Scott said “It’s mad. I can’t quite believe that I’ve been asked to participate in ground-breaking research into a disease I hadn’t even heard of until a few months ago. We are just waiting on the results of some tests before we start but I’m quite excited and hopeful about the whole thing. I’m just so lucky to have such a great research centre nearby.”
The study, also supported by the Clinical Research Network: East Midlands, will be delivered in Leicester until January 2018. Worldwide, it will involve up to 75 adult patients with IgAN from approximately 25 different research centres from the UK, Austria, Germany, Hong Kong, Singapore, Switzerland, USA and Taiwan.
Notes to editors
About the British Kidney Patient Association
The British Kidney Patient Association is the national charity working to improve the care and quality of life for everyone affected by kidney disease in the UK. As the leading grant-giving kidney patient charity in the UK we provide a range of support services including:
- Educating and informing patients, the public and healthcare professionals about kidney disease.
- Campaigning to improve the lives and choices of kidney patients
- Funding kidney units, healthcare professionals and projects to improve services and quality of patient care
- Providing financial support to patients for domestic bills, respite holidays, education and some hospital travel
- Commissioning research to improve kidney services.
About Kidney Research UK
The charity Kidney Research UK was founded in 1961 and is the largest funder dedicated to life-saving research into kidney disease in the UK.
Kidney disease is a silent killer and every year more than 55,000 people are treated for end stage kidney failure, 3,000 people die on dialysis, while 350 die waiting for a kidney transplant. Kidney Research UK is dedicated to substantially reducing these numbers through funding life-saving research into kidney disease and by generating public awareness of kidney health.
90 per cent of people on the transplant list are waiting for a kidney, which is more than 6,000 patients. Even though cases of kidney failure are increasing by four per cent every year, Kidney Research UK must turn down four out of every five research proposals it receives due to a lack of funding – proposals which are aimed at enhancing treatments and ultimately finding a cure for kidney disease.
About the NIHR Clinical Research Network:
The NIHR Clinical Research Network is part of the National Institute for Health Research. We provide researchers with the practical support they need to make clinical studies happen in the NHS, so that more research takes place across England, and more patients can take part. This practical support includes:
• reducing the “red-tape” around setting up a study
• enhancing NHS resources, by funding the people and facilities needed to carry out research “on the ground”
• helping researchers to identify suitable NHS sites, and recruit patients to take part in research studies
• and advising researchers on how to make their study “work” in the NHS environment.
The NIHR Clinical Research Network operates nationally across England through a national coordinating centre and 15 local branches delivering research in the NHS across all disease areas.
The NIHR Clinical Research Network: East Midlands is hosted by University Hospitals of Leicester NHS Trust. The host is responsible for ensuring the effective delivery of research in the Trusts, primary care organisations and other qualified NHS providers throughout the East Midlands area.
• www.crn.nihr.ac.uk/emids – Website for CRN: East Midlands