A patient from Birmingham is the first person to be recruited into a new worldwide study to test new treatments for a potentially life-threatening kidney condition called IgA nephropathy. The research team responsible for this fantastic achievement is based in the John Walls Renal Unit at Leicester General Hospital.
IgA nephropathy is an autoimmune disease that affects the fine filters of the kidneys. In healthy kidneys, these filters act like a sieve to clean the blood and enable the body to expel waste products it doesn't need in the urine. However, in people with IgA nephropathy, a common antibody in the blood called IgA that helps us fight infection is for some reason deposited in the kidneys. This produces inflammation and scarring in the filters, which means they do not function at the same levels as would be expected in a healthy person.
The new study is looking at the effectiveness and safety of a drug called LNP023, which blocks a process in the body that is known to cause inflammation and organ damage in people with autoimmune diseases such as IgA nephropathy.
The first worldwide participant is John Watts (55) from Knowle, near Solihull in Birmingham. He was recruited on 6 February 2018.
John said: "I was ill in 2012 with kidney trouble, which involved a number of tests and from these a diagnosis of IgA nephropathy was made. I thought I should read up on this illness and understand it. I was just doing as people do and went onto Google. I happened to find some notes put on by Professor Barratt saying we are looking for people to take part in trials. That was in 2013. We've been going steady ever since!"
Professor Jonathan Barratt, honorary nephrology consultant at Leicester's Hospitals and Mayer Professor of Renal Medicine at the University of Leicester, is leading the study. He said: "We are delighted to have recruited the first patient into this important global study in Leicester. John is very knowledgeable about his condition and this is his third clinical trial with us. He's like part of the team.
"By leading this study we hope to establish whether the new drug reduces kidney inflammation and improves kidney function in patients with IgA nephropathy. We should also gain insights into what the correct dosage of the drug should be, how safe it is and how well patients tolerate it because we are trialling the drug at different doses, and indeed by using a placebo which contains none of the drug as a comparison."
Professor Jonathan Barratt leads the Mayer IgA Nephropathy Laboratories at the University of Leicester. In 2017, the University of Leicester received a gift of £2.7 million from philanthropist Jimmy Mayer to support his research group in further understanding the mechanisms that lead to the development and progression of IgA Nephropathy and to establish the world's first international registry of IgA Nephropathy patients.
Although not well known, IgA nephropathy is the most common form of fine filter kidney inflammation in the UK. It can affect anyone, although most diagnoses are in men during their teens and twenties, often following a bout of illness such as a chest infection. Many people affected by the condition first find out about it because they have passed blood in their urine and have made contact with a healthcare professional to investigate the matter. Sadly there is currently no cure, so treatment focuses on reducing blood pressure and maintaining a healthy lifestyle to limit kidney damage as much as possible. A significant number of affected people with the condition will end up on dialysis or need a kidney transplant.
On being part of the clinical trial, John said: "I agreed to take part because they asked me, said I was suitable, said it was a new drug and they thought I'd be ideal to go on it if I wanted to. For me it's a big privilege being involved in this. It's for my benefit – our benefit – and for those who suffer from this disease. Why wouldn't you be a part of it when it's worth it?"
At the present time John, who is an independent financial consultant, says he feels well and enjoys playing tennis, getting out in the garden and spending time with his family.
For more information about the study, which is sponsored by the pharmaceutical company Novartis, visit: https://clinicaltrials.gov/ct2/show/NCT03373461.
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* Photo of patient John Watts available here: https://www.dropbox.com/sh/4k3agx7l1gfql46/AAAcXmkM5ws6JIVmO0OalXU4a?dl=0
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