Update Autumn 2019

Autumn 2019 Issue 20

THE MAGAZINE FROM KIDNEY RESEARCH UK

FROM WAR-TORN IRAQ TO FIGHTING KIDNEY DISEASE PAGE 08

Big step forward tackling cyst growth in ADPKD PAGE 04

Patient perspective on nocturnal dialysis PAGE 10

Technology helping spot CKD progression PAGE 14

Welcome Welcome to the autumn issue of Update magazine, I hope you enjoy reading it. I feel very proud and inspired by the work we do, particularly when I hear stories like Soma Meran’s. We are currently funding Dr Meran’s team at Cardiff university and she shares our belief that kidney patients deserve better.

We are excited to be able to bring you news of life changing breakthroughs. Scientists from the University of Sheffield and the USA are developing a new class of drugs to treat autosomal dominant polycystic kidney disease (ADPKD), a major cause of kidney failure. Over the last 12 years the Sheffield team have received around £700,000 from Kidney Research UK, which has helped them develop this project.

As Kidney Research UK continues to grow as an organisation, conversations with patients, their families, staff, health professionals and researchers motivate us to think bigger. Kidney patients are experts in their own condition, and we are working hard to ensure our research is shaped by them and their experiences.

With your help, we pledge to aim even higher; broadening our thinking and significantly accelerating the rate of advance.

I would like to take this opportunity to say thank you, we are immensely grateful for your ongoing support, it enables us to commit to taking the next steps on our journey towards a world free from kidney disease.

Patients and researchers celebrate the gift of life at the British Transplant Games Hundreds of transplant patients took part in the 2019 Westfield Health British Transplant Games hosted in Newport, Wales this summer, enjoying four days of sport and conversation about patient experiences and research.

After an Olympic-style parade during the opening ceremony, transplant recipients competed in a wealth of sports and found out more about the work of charity sponsors, including Kidney Research UK. Expert researchers joined Kidney Research UK’s stand, helping raise awareness of our work and giving people the chance to experience some hands-on medical puzzles, including a felt stick-on organ anatomy game.

Researchers Carl May and Dr Gavin Welsh from the University of Bristol demonstrated how the kidney’s filtering system works and what happens when the system breaks down using water, sand, marbles and sieves. And competitors learned about research at Cardiff University looking at improving transplant opportunities for patients who are sensitised due to increased antibody levels.

“The games are a highlight of the year for the charity,” said Sarah Harwood, transplant recipient and patient involvement officer at Kidney Research UK. “Seeing people who have gone through such adversity, and still face challenges every day, achieving so much together is incredibly inspiring. These are the people we are working to help and it is a joy to be part of their celebrations and show them what we are doing to make things better.”

Sarah Harwood playing the stick-on anatomy game with a supporter

Diary dates 2020 Sandra Currie, Chief Executive

The Vitality Big Half

March 1

London

Run 13.1 miles

World Kidney Day

March 12

Everywhere

Raise awareness

Sublime Peterborough Marathon

April 5

Peterborough Run 26 miles

Contact the editorial team Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ

Virgin London Marathon

April 26

London

Run 26 miles

Prudential Ride London 100

August 16

London

Ride 100 miles

Tel: 0300 303 1100 pressoffice@kidneyresearchuk.org www.kidneyresearchuk.org

Tour O The Borders

Date TBC

Peebles

Ride 56 or 74 miles

Simplyhealth Great North Run

September 13 Newcastle

Run 13 miles

Designed by www.adeptdesign.co.uk

Charity registration numbers: 252892 (England and Wales) SC 039245 (Scotland)

Find out more: www.kidneyresearchuk.org

Bridges Walks

Dates TBC

Various

Walk 7 miles

Skydiving

Various

Various

Jump from a plane

Bungee jumping

Various

Various

Jump from a building

NEWS // P03

A SUMMER OF

BRIDGES WALKS Walking to help bridge the gap between kidney disease and a cure, Kidney Research UK supporters – not forgetting their dogs – created a wonderful spectacle in London, Newcastle and Glasgow this summer.

Taking part in the charity’s flagship sevenmile Bridges Walks events, the walkers raised awareness of kidney disease and funds to enable more life-saving research.

TV talent show stars Nicholas McDonald and Jamie Lee Harrison serenaded walkers in Newcastle and Glasgow, adding a festival feel to the events. Researchers also joined

the walks this year, sharing their insights into their work and answering questions about the future of research.

“Our walks this year have been fantastic,” said Marc Shaw, head of community and events at Kidney Research UK. “It was moving to see so many people whose lives are affected by kidney disease take on the walks, raising even more awareness and funds to power our research.”

Kidney transplant statistics show progress is not fast enough New figures released from NHS Blood and Transplant show that the transplant waiting list for kidney patients has fallen for the tenth year in a row. There are 4,977 people waiting for a new kidney – a one per cent drop since the previous year.

But, during the last year, 260 people died while on the waiting list for a kidney and there continue to be large numbers of people suspended or removed from the list each year. Often because their health deteriorates, these people are denied the chance of the more normal life a transplant offers.

“We’re acutely aware of the big picture,” said Sandra Currie, chief executive of Kidney

In July, over 100 scientists and doctors from across the heart, kidney, mental health and diabetes world came together at the Royal College of Physicians in London to begin to address how best to prevent or treat people living with more than one long-term medical condition.

Organised by the charity, in partnership with the Renal Association, NIHR and the Royal College of Physicians, a range of experts and patients spoke about their research and experiences of treating, or living with conditions such as heart disease, stroke, diabetes, obesity, frailty and mental health.

In London at the end of June more than 700 people enjoyed the seven-mile walk through the heart of the capital along the Thames. Among them was Theresa Winn, who has had two major kidney operations.

“I count myself very lucky, having two of the best surgeons,” she said. “My youngest brother is now going through rigorous tests to enable him to donate a kidney to his stepson. Without Kidney Research UK, none of this would be possible, so I will be forever grateful to all involved. I will be taking part in the London Bridges Walk for as many years as I can.”

Experts gather to tackle multiple medical conditions

Research UK. “The number of people at end stage kidney failure continues to rise by three per cent year on year, so the pressure on the NHS for transplants and dialysis care will persist. Early detection and prevention are therefore key areas of our research programme.”

People with kidney disease are more likely to develop conditions such as heart and circulatory diseases, diabetes, and the same is true in reverse.

But often, in practice, doctors treat people for one of these diseases in isolation rather than the whole person, and specialties don’t talk to each other.

Even though these diseases affect different organs, we think there may be common causes underpinning them, such as inflammation and scarring.

“As a charity, we wanted to provide an opportunity for experts from different disciplines to talk to each other and start to develop new ideas about how best to tackle this growing problem,” said Michael Nation, director of development at Kidney Research UK.

There was great energy in the room and it has opened a number of avenues which we are now exploring. We hope it ultimately leads to a change in how people are currently treated and how research takes place, and makes life better for people living with multiple diseases.

To make a gift to Kidney Research UK call: 0300 303 1100

RESEARCH ROUND UP // P04

A hereditary disease which affects over 60,000 people in the UK and around 12 million people worldwide.

New drug compound could tackle the major life-limiting kidney disease ADPKD Scientists from the University of Sheffield and the USA are developing a new class of drugs to treat autosomal dominant polycystic kidney disease (ADPKD), which is a major cause of kidney failure. Over the last 12 years the Sheffield team have received around £700,000 from Kidney Research UK, which has helped them to develop the skills and knowledge to contribute to this exciting project.

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orking with colleagues in the USA, the Sheffield researchers have tested a compound developed by Glasgowbased biotech company Mironid in the lab to treat ADPKD, a hereditary disease which affects over 60,000 people in the UK and around 12 million people worldwide. The findings have been published in the prestigious journal Proceedings of the National Academy of Sciences (PNAS).

Kidney Research UK has funded work on ADPKD at the University of Sheffield for several years, helping to develop vital knowledge about how the disease develops and how it might be managed.

Most recently, grants from the charity have facilitated the team’s investigations into how to control the ‘messenger molecule’, cyclic AMP, which affects how quickly cysts grow and expand in the kidneys.

Find out more: www.kidneyresearchuk.org

RESEARCH ROUND UP // P05

Stopping cysts growing ADPKD is caused by a genetic fault that stops kidney cells developing normally and causes cysts to form inside the kidneys. The cysts, which are like fluid-filled blisters, grow and eventually destroy normal kidney tissue and the kidneys stop working properly. This leaves patients needing life-saving treatments, such as dialysis or a kidney transplant.

In ADPKD cells, cysts develop and grow because they produce higher than normal levels of a ‘messenger molecule’ called cyclic AMP (or cAMP).

One of the many known functions of cAMP is to tell cells when to divide and when to release fluid.

The new compound discovered

by Mironid activates an enzyme called PDE4, whose natural role is to break down cAMP. Using cells and tissues from ADPKD patient kidneys, researchers at Sheffield and the US have found that when the Mironid compound switches PDE4 on, levels of cAMP in the diseased cells fall and fewer cysts grow.

FAST FACTS c c AMP is a messenger molecule which tells cells when to divide and when to release fluid c P DE4 is an enzyme which breaks down the messenger molecule cAMP

Personalised treatment potential The reversible nature of the compound means it could rapidly and accurately control PDE4 activity in patients, according to the dose given. This suggests that a future treatment for ADPKD could be tailored to an individual patient’s needs and the severity of their disease. In theory, the compound could also stop cysts forming due to ADPKD in other organs, especially in the liver.

HAVING PKD IN THE FAMILY

Professor Albert Ong

I would love to think that ADPKD could one day be a disease that people can successfully manage throughout their natural lives, rather than one that could shorten their lives.

Professor Albert Ong

Professor Albert Ong, a consultant nephrologist and professor of renal medicine who led the Sheffield work said: “As a researcher, it’s very exciting to be involved in the early stage development of a completely new class of drugs.

“Like most genetic diseases, ADPKD cannot be cured. This discovery gives me hope for the many patients I see in my clinics that there could be another effective new treatment in the future to keep the disease in check for much longer, either on its own or in combination with other drugs such as tolvaptan.

“I would love to think that ADPKD could one day be a disease that people can successfully manage throughout their natural lives, rather than one that could shorten their lives.”

The next step is to refine the compounds and develop a new medicine to treat ADPKD patients, which will then be tested in a clinical trial.

Wayne Smith was just nine years old when he lost his father to polycystic kidney disease (PKD). A family myth that the disease was only passed down through the female line kept Wayne in the dark about his own health for decades. His blissful ignorance ended at the age of 40, during a routine medical for his pilot’s licence.

“The machines were showing I had unbelievably high blood pressure. The doctor said I had to get myself to the hospital straight away.

“It was scary. I’d had such a gradual build-up of feeling worse, getting headaches every day, that I didn’t notice it. But once I was on medication for my blood pressure, I started to feel considerably better.”

Despite the shock diagnosis of PKD, Wayne thinks he is very fortunate.

“I’ve been remarkably symptom-free. I have had the occasional cyst rupture which has given me a lot of pain and blood in the urine, but that’s only happened about three times in the whole journey. It used to lay me out for a week, but I’d get over it. I’ve been incredibly lucky.

“It was very sobering, going to dialysis three times a week and seeing people really suffering with kidney related diseases. What was a shock was the frailty of some of the people there. I’m very lucky by comparison.”

Wayne’s luck is holding out. After four years on the transplant waiting list, an altruistic kidney donor unexpectedly came forward, and he’s just now recovering, with his new kidney in place.

As a dad to five children, Wayne still has a keen eye on advances in research. “The worst thing for me personally, is the guilt factor, knowing that I’ve passed PKD onto two of my five children – the other three I don’t know about yet. Honestly, for me, that’s the worst part.

The progress of research like the Sheffield work suggests that in, say, 10 years, my kids may be able to avoid dialysis, avoid transplant.

It’s something very real that can be achieved.

Wayne, shortly after his successful transplant operation

To make a gift to Kidney Research UK call: 0300 303 1100

RESEARCH ROUND UP // P06

Scientists discover molecule protects against kidney disease in diabetes In September, our funding helped scientists make an exciting discovery – that boosting a molecule called soluble Nogo-B (or sNogo-B) can improve diabetic kidney disease in mice by protecting blood vessels.

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his finding suggests that targeting and boosting this molecule using drugs could be a way to prevent kidney blood vessel damage in diabetes. This is a dangerous complication of the condition and leads to many people with diabetes requiring dialysis or a transplant.

Diabetes – a common cause of kidney disease Blood vessel damage is the primary reason why people with diabetes develop kidney disease. When this happens, the kidney’s filters become damaged, and as a result, they cannot retain important proteins in the body which then leak into the urine.

“From studies in other organs, we already knew that soluble Nogo-B was important in blood vessel repair,” explains Professor Luigi Gnudi from Kings College London, who led the study with colleagues including Dr David Long at Great Ormond Street Hospital Institute of Child Health, University College London. “And because blood vessel damage is the reason diabetic kidney disease develops, we thought that boosting this molecule may protect people with diabetes from developing kidney disease as a complication.”

Find out more: www.kidneyresearchuk.org

Published in the journal Diabetes, their research, funded by both Kidney Research UK and the British Heart Foundation, confirmed just that – that boosting sNogo-B in the circulation of mice does protect their blood vessels in diabetes and is an important molecule in repairing blood vessels.

“We found that mice where sNogo-B was boosted had less signs of kidney disease,” explains Dr Long, a former Kidney Research Dr David Long Senior Fellow. “They had less protein in their urine, and both the inner lining of their blood vessels and the kidney’s filter was less damaged.”

“This work is exciting because it provides a completely new target to treat diabetic kidney disease,” says Professor Gnudi.

“We are really excited about where this research may lead.

Professor Luigi Gnudi

“We’d like to say big thank you to Kidney Research UK and the British Heart Foundation for supporting us.

The donations they receive from their wonderful supporters have enabled us to carry out this work and search for new ways to prevent, treat and potentially cure kidney disease. We hope this study is paving the way.”

Offering hope for a treatment

Diabetes – a growing problem

Next, the research team want to study this molecule in more detail, to work out exactly how sNogo-B works and protects blood vessels in both mice and people with diabetes. They also want to talk to and work with potential industry partners to explore how drugs might be able to target this protective protein.

Diabetes is the most common cause of kidney failure in the UK – at least 9,900 people have end-stage kidney failure because of damage directly caused by their diabetes. And right now, 22,600 people in the UK with diabetes need dialysis or a kidney transplant.

RESEARCH ROUND UP // P07

Why we must tackle diabetic kidney disease Diabetic kidney disease patient and health campaigner Sarah Green is encouraged and excited by this research breakthrough.

“It’s amazing to think that, in the future, scientists may be able to prevent or at least slow down the progress of the many problems caused by diabetic kidney disease,” says Sarah.

“Studies like this are essential because the reality of living with advanced diabetes and kidney disease can be stark.

Treatments for one condition are often incompatible with the other and then problems can begin to snowball.”

Sarah was diagnosed with Type 1 diabetes when she was 11 years old, shortly after her mum had received the same diagnosis. But her blood sugar levels remained uncontrolled for nine years until it was finally discovered that she was resistant to insulin.

But with the population ageing and more people dealing with other health issues such as obesity, the numbers of people living with diabetes is on the rise. Diabetes UK predicts that there could be as many as five million people with diabetes in the UK by 2025.

And because almost four in five people with diabetes will develop some stage of kidney disease during their lifetime, this means more people are also likely to develop kidney disease as a result.

A focus for the future As diabetes is having such a big impact on kidney disease and the problem is set to grow, tackling kidney disease in people with diabetes will be a big focus for us as a charity over the coming years.

We believe we can protect people with diabetes from kidney disease and help those with the condition to live longer, healthier lives.

Read more about our research by visiting www.kidneyresearchuk.org

“My kidney function wasn’t monitored on a regular basis, even though protein had been found in my urine as a teenager, which can indicate potential kidney damage.

“I had no idea that my diabetes had damaged my kidneys. I only found out there was a problem after a visit to my GP. I thought I had a water infection but I discovered I had stage three chronic kidney disease (CKD).

“We need to catch people much earlier and be aware of warning signs before their diabetes can cause any kidney damage.”

Sarah offers emotional and practical support to young kidney patients in and around Manchester and also helps to run a Facebook support group for young adults with kidney disease.

“I’m at a stage now where my health problems will only become more complex and difficult to manage as time goes by,” says Sarah.

I don’t want this to happen to anyone else – that’s why it’s vital that we make people aware of the link between diabetes and kidney disease and identify who is at risk so we can then start to introduce preventative treatments.

If you would like to join our community of patients interested in research, visit: www.kidneyresearchuk.org/research/patient-involvement/kidney-voices-for-research If you are aged between 18-30 and would like to join the Young Adult Kidney Group, visit www.facebook.com/groups/youngadultkidneygroup or @YAKidneyGroup

To make a gift to Kidney Research UK call: 0300 303 1100

INTERVIEW // P08

From war child to leading the fight against kidney disease Growing-up in a war-torn country, separated from her parents hundreds of miles away in London, kidney specialist Soma Meran says the childhood memories of the Iraq war will always shape her.

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oday, she pours her energy into finding a cure for kidney disease, with a drive that can be attributed to the wonderful relationship she had with her grandparents.

Soma’s parents were doctors and left Iraq for Paris to study for their postgraduate medical qualifications.

They left Soma with her grandparents hoping they would take her to join them once they were settled. However, the political situation deteriorated and Soma was prevented from leaving the country – it also became unsafe for her parents to return to get her.

She said: “I was oblivious to it all as I was so young. I stayed with my grandparents for another six years. They were not illiterate but they had no education beyond primary school, so they were very keen for their children and grandchild to have more. They wanted me to live a different life without having to fight for basic human rights and wanted me to have an education because it was a privilege that they never had.

Both strong believers in education they nurtured Soma’s love for learning, as well as instilling in her the importance of doing the very best you can to help people.

She said: “I’m Kurdish, from the north of Iraq. I was born there but came to the UK when I was seven. My family lived under the Saddam Hussain regime, my grandad was a humanitarian against this regime.”

“Because of this my grandad’s family were targeted, nearly all of his children, (including my parents), had to leave Iraq for their own safety.”

Find out more: www.kidneyresearchuk.org

Kurdish refugees traveling by truck in 1991

Soma with her grandparents

“I managed to re-join my parents in London when I was eight.

“When I was sent to the UK to be with them my grandmother was sadly killed shortly after. I believe she was shot by people who were looking for my grandfather. I wasn’t told about her death until I was ten years old.

This had quite a profound effect on me as it meant the grief I felt wasn’t immediate. I still get upset now when I think about her.”

INTERVIEW // P09

From a very young age Soma saw having an education and being able to work as a huge privilege.

FOCUSING ON FIBROSIS

She studied hard, doing her PhD at Cardiff and was inspired to become a nephrologist by the people she worked with.

Dr Meran and her team are looking for ways to tackle kidney fibrosis, or scarring – where excess scar tissue forms. The scar tissue prevents the kidney working properly and is an important factor in chronic kidney disease development.

One of them was Professor Steve Riley.

Soma said: “He was my registrar when I was a junior trainee. He is just a fantastic clinician and his attention to detail was incredible. He gives 110 percent to every patient he sees. I also feel he has real empathy for his patients – he is someone I would want looking after me if I had kidney disease.”

Dr Riley inspired Soma to become a nephrologist, along with Professor Aled Phillips who was her PhD supervisor.

Professor Phillips is a clinical academic in nephrology who introduced Soma to the field of cell biology in kidney disease. His research drive and work ethics inspired her too and he has continued to be an influential mentor during her research career.

Soma with her parents

“What also drives me are the patients I see.

I really feel for them, particularly if they need dialysis because it takes over their lives.

“I see what they go through and I really feel that we need to progress research in this area so we can offer more options for these people.”

Soma hopes that research will provide an alternative to dialysis which offers a better quality of life to patients with kidney failure.

Today Soma successfully juggles life as a single mother, Kidney Research UK funded researcher and a clinician, with admirable focus.

Already we are seeing evidence that the progress of some kidney diseases can be reversed or halted. We just need to find the right set of circumstances to take this to the next level.

She said: “I’m just very passionate about the research and the science I do. Sometimes I wake up in the morning and I can’t believe I’m being paid to do what I love.

“Funding is a huge issue for any research, as ultimately it is very expensive – but if we can overcome those obstacles I think anything is possible.”

In collaboration with the University of Exeter and the Cleveland Clinic Lerner Research Institute, the research involves altering the cells responsible for wound healing and tissue repair and could lead to treatments that would prevent and even reverse kidney fibrosis.

Dr Meran said: “We were amazed to discover that a protein called hyaluronidase-2 can bind to RNA (long chains of information, similar to DNA) in a cell and alter its activity. We could potentially use this technique to stop the cells responsible for fibrosis and scar formation from producing scar tissue.

This opens up exciting new research avenues in the study of fibrosis.”

To make a gift to Kidney Research UK call: 0300 303 1100

NOCTURNAL DIALYSIS // P10

Nocturnal dialysis: A patient’s experience A familiar face in the kidney community, Maddy Warren is often held up as an aspirational person, with her incredible achievements as a kidney patient and for her positive, can-do attitude to life.

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former trustee of Kidney Research UK, over the years Maddy has raised thousands of pounds for us and other UK kidney charities. She became the first woman on dialysis to complete the Virgin Money London Marathon in 2018 and she is a member of a women’s skydiving team.

dialysis machine will take over the role of her kidneys for the rest of her life.

Yet behind the scenes Maddy relies on dialysis to keep her alive. She has focal segmental glomerulosclerosis, an autoimmune condition which attacks her kidneys.

Maddy will be the first to tell you she’s no different to any other patient.

Her success, she believes is down to nocturnal, home haemodialysis, five, sometimes six nights a week for seven hours – as opposed to three times a week in a hospital for between four and five hours.

Complications after a kidney donated by her father failed means that she is no longer eligible for transplant and a

Find out more: www.kidneyresearchuk.org

Yet despite being on dialysis for more than 20 years – if statistics are to be believed life expectancy on dialysis is between five to 10 years – she is happier and healthier than ever.

So what’s her secret?

NOCTURNAL DIALYSIS // P11

I get messages from people all the time asking me why I’m so healthy and full of energy and I put it all down to my commitment to nocturnal dialysis.

She said: “My own personal rule is to hook-up to the machine at least five nights a week. Even if I’m exhausted after a long-day, I am disciplined about it. The majority of people, around 95 per cent of those on haemodialysis, do it in a hospital three times a week, over a much shorter time period.

“Because of this the process is very aggressive on the body and can put a lot of strain on the heart. It can leave you feeling terrible as well. I did it for a while in the early days and it wasn’t pleasant. Not everyone can or wants to do their dialysis at home and I totally respect that. But for me, doing nocturnal dialysis at home allows me to live a full and happy life.

“It’s all about flexibility for me as I’m not tied to a machine during the day. I usually try to get at least six hours each session and I avoid having more than one night off in a row.

“I get messages from people all the time asking me why I’m so healthy and full of energy and I put it all down to my commitment to nocturnal dialysis.”

Maddy says she knows some patients who dialyse at home as much as seven times a week, which is even better, because the more hours you do the more often, the gentler it is on the body.

This makes sense because the dialysis machine is replicating the job of the kidneys more effectively, since they would be working 24 hours a day.

She added: “I cannot tell you how dreadful I felt on dialysis just three times a week compared to how I feel having it overnight.

That’s why I get frustrated that more patients are not encouraged to consider home haemodialysis as an option.”

This summer Maddy and her mother spent their holiday walking the Thames footpath, starting in the Cotswolds.

“We managed to walk 91 miles over the course of six days, which is about half-way to London. It was absolutely stunning, we had such a lovely time. I was able to do it because I could drive home each night and do dialysis while I slept, then go back and pick up the route the next day.

“It meant I could eat and drink what I wanted over the week, so my energy levels didn’t dip.

“I have always tried to fit dialysis around my life not live around dialysis. It helps that I was diagnosed at a young age and started managing my own dialysis aged 14.

Dialysing at home has given me maximum control over my treatment. Now I can’t really remember life without it. With nocturnal haemodialysis I achieve a similar level of clearance as a functioning kidney transplant.”

Maddy’s advice to anyone considering home dialysis would be to speak to a member of their renal team about the options available to them.

“Just keep asking, if you think it would be right for you. Be your own biggest advocate, because we need more equality of care for kidney patients.”

We managed to walk 91 miles over the course of six days, which is about half-way to London...I was able to do it because I could drive home each night and do dialysis while I slept, then go back and pick up the route the next day.

A HEALTH PROFESSIONAL’S VIEW Rachel Cox, a renal practice educator says: “Home haemodialysis is without a doubt an excellent option, providing both independence and flexibility.

Nocturnal dialysis provides additional benefits such as freeing up more of the day and a good quality of dialysis.

“But unfortunately it doesn’t suit everyone. Some individuals will not be medically stable enough or have not got the home support to allow this treatment to be safe. Some homes will not be big enough to accommodate all the equipment and machinery required and, depending on circumstance, it might not be possible to adapt or convert the available space. Not every centre can offer home dialysis and it depends on local policy as to what is available in terms of nocturnal dialysis.

“The first port of call should be to talk to your local centre about what is available and ask about your suitability for home nocturnal dialysis.”

Our Dialysis Decision Aid booklet helps people to evaluate which type of dialysis is best for them. You can find this on our website: www.kidneyresearchuk.org/ kidney-health-information

To make a gift to Kidney Research UK call: 0300 303 1100

RESEARCH ROUND UP // P12

Spotlight on… our research Every year, we fund research around the country to understand kidney disease better, and find new ways to prevent, diagnose or treat it. Here’s a snapshot of some of the research we are funding right now…

Boosting donor kidneys and making more transplants possible

Can we reduce long term kidney scarring by blocking sugar uptake?

People who need a kidney transplant wait more than two and a half years for a new kidney, because there are not enough healthy kidneys available. In fact, surgeons deem around half of the donor kidneys unsuitable for transplant, and they are thrown away. This is a major blow to the person waiting for the organ, and the family of the donor.

One in four people with diabetes will develop long term kidney problems, and the outlook for people with diabetic kidney disease is worse than various cancers. This might be partly because the kidney is exposed to high levels of sugar, but we don’t know how this causes damage, or how to stop it.

Professor Mike Nicholson and his team at the University of Cambridge have developed a pioneering technique called ‘warm perfusion’. Here, the donor kidney is connected to a machine that flushes the organ with oxygenated blood before it is transplanted.

Certain drugs stop the kidney reabsorbing the sugar that would have been lost in the urine, and we know these benefit people with diabetes. PhD student Xinlu (Lana) Pan from St Helier Hospital in London has designed a new cell model of diabetic kidney disease to study how damaged kidney cells react to these drugs. First, she will find out if blocking sugar uptake will reduce levels of scarring proteins in these cells.

This process revives and repairs the kidney and allows antiinflammatory agents and other drugs to be pumped through, ‘warming’ and priming the kidney, to give it the best chance of success. This process also allows doctors to ‘test drive’ the kidney before it is transplanted.

Now halfway through their clinical trial, the Cambridge researchers are well on the way to proving how well this exciting technique works. Ultimately they hope warm perfusion will be used across the UK, making more kidneys available to more people.

The Cambridge team were awarded £740,881 through the Making Every Kidney Count appeal.

Find out more: www.kidneyresearchuk.org

Once this lab work is complete, the team will translate their work into people. They will measure kidney scarring proteins in urine from patients and expect to see levels fall after patients have taken the drug.

If the clinical trial works, it may reveal a way to protect people with diabetic kidney disease from long term kidney scarring.

Lana’s supervisor Dr Mark Dockrell received a PhD studentship grant of £65,350.

RESEARCH ROUND UP // P13

Can we treat kidney failure in children using gene editing?

Acute kidney injury in pregnancy:

Nephronophthisis is a cystic kidney disease which affects children and is the most common genetic cause of childhood kidney failure.

We know this condition can be caused by several faulty genes, which makes it extremely hard to treat.

Acute kidney injury, or AKI – where your kidneys suddenly stop working properly – can be a complication of other illnesses or dehydration. When AKI happens during pregnancy it can be dangerous for both mother and baby, so AKI must be diagnosed and treated quickly in pregnant women.

Dr Shalabh Srivastava from the University of Newcastle is working out what a gene called CEP290 does. He studied these genes in cells to understand how the faulty gene occurs and discovered that they could force the genetic reading machinery to skip over the fault and produce a normal protein using a clever technique called ‘exonskipping’.

Doctors diagnose AKI using a blood test to detect raised levels of a chemical called creatinine. But creatinine levels fall during pregnancy, and the normal pregnant range for creatinine is unclear. This makes it harder to judge when creatinine levels should be a cause for concern in pregnant women, raising the risk of AKI going undetected for too long.

As well as proving that gene editing could be a good way to treat children with nephronophthisis, it showed that a painful and invasive kidney biopsy was no longer needed. The genetic material was extracted from kidney cells in urine – which have come directly from the kidneys.

In this study, midwife Katherine Clark aims to improve the reliability of the AKI test in pregnancy and look for ways to predict it. She’ll establish what the normal creatinine range is, what levels of creatinine indicate AKI in pregnancy, and which women are most at risk. She’ll also investigate a new way to predict AKI.

This work is an important milestone in proving the treatment potential for gene editing, opening new possibilities for treating thousands of people affected by genetic kidney disorders.

Shalabh’s research is funded by a Training Fellowship Grant of £223,389.

Can we improve diagnosis and find it earlier?

This exciting research could be the first step towards a routine test for this dangerous condition in pregnancy.

Katherine received an Allied Health Professional Fellowship Grant of £227,913 in partnership with The Stoneygate Trust in March this year.

To make a gift to Kidney Research UK call: 0300 303 1100

KIDNEY DISEASE // P14

Helping people at greatest risk of progressive chronic kidney disease We are leading a UK-wide project, supported by the Health Foundation, which involves over 20 renal units and pathology laboratories, and their surrounding GP practices.

The project, called ASSIST-CKD, involves around 11-12 million people across the UK.

O

ur aim is to provide better and safer patient care by identifying people with chronic kidney disease (CKD), who are at the greatest risk of disease progression.

We want to be sure they are referred to secondary care at the right time, for the right treatment in the right care setting, to potentially reduce the rate of decline and so delay or even avoid the need for dialysis or a kidney transplant. We also want to avoid people ‘crash-landing’ into secondary care – urgently needing treatment such as dialysis without the time to prepare.

Nearly two million people in the UK have been diagnosed with moderate to severe CKD by their GP, but it is estimated that a further one million people remain undiagnosed, as people with CKD often have little or no symptoms until the later stages of the disease. Patients also have an increased risk of heart and circulatory disease and acute kidney injury (AKI).

The project is based on a system that has been running successfully at the Heart of England Foundation Trust (HEFT) in Birmingham.

It uses software to map data from routine blood tests (eGFR), creating graphs of kidney function over time. For patients with deteriorating kidney function, the participating sites send a report, including

the graph, to the referring GP with a prompt that specialist advice may be needed.

Since CKD graphical surveillance was introduced at HEFT, they have one of the lowest rates of people crash-landing onto dialysis in the UK. Benefits already seen with the ASSIST-CKD project include prompting GPs to re-look at patient notes, review their medications and refer patients to renal teams if progressive kidney disease has not been identified previously.

Patients with more stable CKD can be discharged back into primary care, confident that their kidney function will continue to be monitored via these graphs.

Dr Hugh Gallagher, project lead for ASSIST-CKD said: “There is a UK-wide focus on improving the management of CKD and this project has enormous potential to provide better and safer care in a cost-effective manner. ASSIST-CKD is a collaboration between patients, kidney doctors and nurses, laboratory scientists and the primary care team which should benefit both patients and clinicians. We hope to demonstrate that the programme can be effective in other areas, which should create a powerful case for universal adoption of the service across the UK.” Many of the hospitals involved are still running the system despite their funding only lasting for 12 months.

Clinicians have reported: Improved awareness of kidney disease in primary care Understanding of GPs as to the importance of eGFR progression over time Improved management of medicines that affect kidney function I nvolvement of patients in understanding their condition (where patients have been shown the graph).

We have also received some great feedback.

If the ASSIST-CKD project can prevent even a small number of people from developing kidney failure then it will be worth every penny spent and every man hour worked on it.

Patient representative

FOR FURTHER DETAILS ON THE ASSIST-CKD PROJECT, CONTACT ASSIST@KIDNEYRESEARCHUK.ORG

Find out more: www.kidneyresearchuk.org

FUNDRAISING // P15

NO EXCUSES

Taking the plunge for Kidney Research UK Have you ever wanted to experience the thrill of skydiving? Or maybe you and your friends have always wanted to skydive but couldn’t think of a good enough reason. Well, Kidney Research UK has an offer you simply can’t refuse.

Aimee Smith, of Wesham, and Katie Whish, of Leyland, smashed their initial target of £1,000 for Kidney Research UK and Heartbeat as they took to the skies in Flookburgh.

They chose the two charities as Heartbeat helped their uncle, Stephen Little, following a heart attack and Aimee’s mum, Shirley MacDonald, had a kidney transplant around 10 years ago.

B

y taking part in the charity’s Freedom Skydive you and the rest of our brave #TEAMKIDNEY skydivers can experience the thrill and the excitement of jumping 10,000 feet over the beautiful British countryside – in tandem with an experienced tandem instructor.

Skydive for us and you’ll be directly contributing funds to pay for much needed research to help improve the lives of people living with kidney disease.

These two charities mean such a lot to us.

I’d definitely do it again!

Next time with my uncle right by my side.

SKYDIVE AS PART OF

The skydive went really well. Katie and I were both really nervous but we did it and we would both do it again.

AND YOU’LL RECEIVE: c

A Kidney Research UK t-shirt

c

A fundraising pack full of tips and ideas

c

S upport from our dedicated team every step of the way

c

egular updates to inspire you with R your fundraising

c

E ncouragement from our fabulous team before you jet off and when you land.

Aimee, 30

Kidney Research UK will be with you every step of the way with support and advice to help you make the most of this fabulous experience.

“I chose to support Kidney Research UK because my mum had a life changing operation 12 years ago this January, where my uncle (her brother) donated his kidney to her and it’s still going strong. My sister also has the same issues with her kidneys, so the story may be that she needs a transplant one day. I just hope my brother or I are able to help her when the time comes.

But you don’t have to take our word for it.

Lots of people have already raised hundreds of pounds doing our sponsored skydives. This summer two cousins raised more than £1,500 for Kidney Research UK and another charity which have supported their family members.

“The cause is extremely close to our hearts and we want to make sure that the research provided by Kidney Research UK can continue to grow so that if our family or friends ever need this support in the future it’s available.

We have plenty of places for teams and individuals to take part next year, and some for this October.

“I can’t believe how many people got behind us – people we didn’t even know.

It’s a massive achievement and shows the generosity of those around us and complete strangers which we can’t thank enough.

You only need to raise a minimum of £395 to take part and pay a £70 registration fee.

Register your interest on our website and we’ll let you know about the next Freedom Skydives happening in 2020.

To make a gift to Kidney Research UK call: 0300 303 1100

A GIFT IN YOUR WILL CAN DO SOMETHING INCREDIBLE. It can keep vital research going until a cure is found. It can improve the treatments people are given. It can allow people to live happy and fulfilled lives, without restriction and without fear.

A gift in your Will can be your way of safeguarding the future.

It will help us find the answers we all need.

To find out more about leaving a gift in your Will please call: 0300 303 1100, email: legacies@kidneyresearchuk.org or visit: www.kidneyresearchuk.org/legacy Registered Office: Kidney Research UK, Nene Hall, Lynch Wood, Peterborough PE2 6FZ. Registered charity no. 252892 Scottish charity no. SC039245.