Update magazine. Spring 2022

Update.

Spring 2022

Issue 27

The magazine from Kidney Research UK

TV star’s transplant reality check Page 8 New Alport hub will accelerate research Page 6

Boosting diversity in research Page 10

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News

News

World Kidney Day action on mental health

Be a star of the silver screen!

Do you want the chance to be part of bringing a story about organ donation to UK cinemas? Andrew Smith, a former director and producer for the BBC who received a kidney transplant in 2017, is working with his family to create a thought-provoking film about kidney donation. They are looking for supporters to help them bring the story – appropriately titled Donate – to the silver screen.

This World Kidney Day (Thursday 10 March) politicians around the UK are being charged with improving the provision of mental health services for kidney patients – and you can play your part.

Welcome.

On World Kidney Day the global kidney community will unite to raise awareness of the 850 million people affected across the world. We are showing the UK public that #KidneysMatter every day, all year round – and here is Update to inspire you to make a difference on Thursday 10 March.

As part of the Kidney Charities Together group, our World Kidney Day campaign is raising awareness amongst people who are at risk of kidney disease but may not realise it – such as those living with diabetes, high blood pressure or heart conditions. Real people will be sharing their stories to help drive home the risks some are living with.

If you’d like to get involved on social media, or perhaps by running an information stand in your community, there are downloadable resources you can use. Just visit www.worldkidneyday.co.uk to help highlight the ‘Big topic everyone’s ignoring’.

The scale and impact of kidney disease is vast – and we know how essential research is to improving millions of lives. Are you able to contribute to the fight against kidney disease by fundraising on the day? This year we are asking you to do this your way; you could host a bake sale, a coffee morning or a quiz, in person or virtually.

More ideas and support are available on our website.

We are seizing the day on World Kidney Day and throwing down the gauntlet to policy makers to improve mental health support for kidney patients. I have heard so much from patients and family members about the devastating consequences of poor mental health when trying to cope with kidney disease – and now Covid-19 is causing even more agonising emotional pressure. We have to act now –and we are asking every reader to help. This is your chance to take this critical issue to your political representatives and have your voice heard – see page 2 for full details.

Together we can all make a difference, by uniting on 10 March. And we are, of course, continuing our efforts year-round. Read in this issue of Update how we are working to improve lives every single day.

Thank you for your ongoing support.

Sandra Currie, Chief executive

Growing evidence of the impact of kidney disease on people’s mental health, and the inadequacy of mental health support for kidney patients has been corroborated by an extensive survey carried out by Kidney Research UK. Now we are spearheading a campaign to ensure politicians in Westminster, Holyrood, the Senedd and Stormont hear the concerns of kidney patients, their family and friends – and take action.

Alison Railton, head of policy and external affairs at Kidney Research UK explains: “Kidney patients’ mental health matters – people ought to be able to live well with kidney disease emotionally as well as physically. The current psycho-social support available to patients is lacking in so many areas across the UK, and is woefully under resourced. Our research has shown this impacts people’s wellbeing and also their ability to look after their kidney health.

“This is why we have launched our campaign calling for better mental health support for kidney patients. To help drive this forward, we are asking the kidney community to connect with their MP, MSP, MS or MLA and rally for change.

“We would like people to share their experiences and either write to their political representatives using our template emails, or ask for a virtual meeting, to take place on or around World Kidney Day. This is the first crucial step in helping the kidney community have their voices heard by the people who can make change happen.”

Campaign resources and support are available on our site, including: ca n easy search facility to find your parliamentary representative and template emails to send them c s tatistics, facts and key messages to share c t op tips for attending virtual meetings as a constituent.

Miranda Scanlon, transplant recipient and the charity’s Lay Advisory Group lead said: “It’s brilliant that Kidney Research UK is helping patients hold those in power to account and have their voices heard on this vital topic. I am looking forward to talking to my MP about how much our mental health matters.”

To find out more, please visit: www.kidneyresearchuk.org /mentalhealthmatters

Contact the editorial team Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ 0300 303 1100 pressoffice@kidneyresearchuk.org Website: www.kidneyresearchuk.org Designed by www.adeptdesign.co.uk

Cover photo Marilyse Corrigan, reality TV star, tells us why she donated her kidney to help her ex partner on page 8.

Photo credit: Indigo Wild Studio.

Registered charity no. 252892. Scottish charity no. SC039245.

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate

Andrew and his wife, Sue Tanner, have between them worked on classic programmes including Only Fools and Horses, Doctor Who and Downton Abbey.

“The purpose of the film is to tell a story that might comfort and inspire others, but also to do justice to the memory, and the selfless donation of my donor and donor family,” said Andrew.

Andrew and his team are offering those who donate to their crowdfunding the chance to be named in the credits, or appear as extras or in speaking roles. To support the film, visit www.donatethemovie.com, and follow the links.

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Diary dates We would love to have your support with our events programme for 2022 – for information visit www.kidney researchuk.org. If you have your own event planned, please contact our supporter care team to let us know. #850Challenge Throughout 2022 Quit for a Bit February World Kidney Day Thursday 10 March Kidney Research UK Gala Dinner, The Brewery, London Saturday 9 April Star Wars Day Wednesday 4 May Skydives Sunday 3 July

New partnership a winner

Brave the drop - abseil in London Saturday 11 June London Nightrider Saturday 11 - Sunday 12 June

The BioIndustry Association (BIA) – the trade association for the UK’s innovative life sciences – has chosen Kidney Research UK as its charity partner for 2022.

#850CycleChallenge July/August

The partnership aims to raise funds, increase awareness of kidney health and promote kidney research to the life sciences sector. It was formally launched at the BIA’s gala dinner in January, which raised a fantastic £56,000.

London Bridges Walk Sunday 17 July

Sandra Currie, chief executive of Kidney Research UK said: “There is so much potential in this partnership and the benefits it could bring kidney patients, who urgently need treatments to progress. We are very grateful for the generosity of the BIA and its members and will be drawing on their expertise to help influence policy, build capacity and connect industry, charity and academia to help transform lives.

London to Brighton Cycle Ride Sunday 11 September

“Relationships we develop could help significantly to shorten the journey of novel treatments from bench to bedside and change the face of diagnostics.”

An evening to remember Kidney Research UK’s biggest, most magical Gala Dinner is taking place at The Brewery, London, on Saturday 9 April, and you are invited.

Raising vital funds to transform treatments and give kidney patients hope for the future, the Gala Dinner promises a night of curiosity, magic and transformation!

“We have so many magical surprises in store for our guests – it truly will be an incredible, fun-packed event,” said Gemma Howell, head of philanthropy and partnerships at Kidney Research UK. “The funds raised will help create real, positive change for kidney patients across the UK, and we look forward to welcoming you on the night.”

Great North Run Sunday 11 September

TCS London Marathon Sunday 2 October Andy Cole Fund Gala Dinner, The Dorchester, London Thursday 3 November

or a table please get in touch with the special events team at Kidney Research UK: specialevents@kidneyresearchuk.org, or visit our website for more information: www.kidneyresearchuk.org /gala-dinner We hope you can join us!

An atmospheric, sparkling drinks reception will be followed by a delicious three course meal cooked by The Brewery’s award-winning chefs, extraordinary entertainment, magical moments and an amazing after-party.

You, your friends and family or business colleagues can rub shoulders with our celebrity patrons and play your part in an amazing night’s fundraising. To secure individual tickets

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Covid-19 vaccines

Latest shot in the arm for our Covid-19 research.

We’re supporting a new study to understand how well further vaccine doses protect immunocompromised patients against Covid-19

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ith Covid-19 presenting new challenges each month, ongoing research is the very best way we can help protect kidney patients.

Having funded research tracking the immune responses of people on dialysis to the first and second vaccine doses, we were concerned about early results from kidney transplant patients in other studies.

Patient groups representing people with other conditions shared our concerns.

Tracking responses to further doses was an obvious next step. We rallied a group of invested organisations - the Medical Research Council, Blood Cancer UK, Vasculitis UK and the Cystic Fibrosis Trust - and together we invested £850,000 to fund a new national study recruiting 35,000 immunocompromised people.

Led by researchers at Imperial College London, the MELODY study began in December 2021. It is investigating how people with kidney and other organ transplants, blood cancer and autoimmune diseases respond to third doses of the Covid-19 vaccine and their future risk of infection, hospitalisation and survival over six months.

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

Covid-19 vaccines

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As well as antibody testing, the MELODY study will capture information on clinical and social factors, which will enable the identification of those immunocompromised patients who are most at risk.

Dr Michelle Willicombe, study lead

Identifying high risk patients

Participating at home

Why I’m supporting the MELODY study

It is estimated that approximately 500,000 people in the UK have an immunocompromising condition and research suggests that Covid-19 vaccines may not provide full protection for many of these patients.

Patients are using a home-based, self-administered rapid test at least 21 days after they receive their third dose of the vaccine, which requires a drop of blood from a thumb or finger prick to detect whether they have developed antibodies.

Jim Hayton lost his sister Elaine to Covid-19 in August last year. Like Jim, Elaine was living with a long-term kidney transplant; like Jim, Elaine had promptly taken up her first two vaccinations.

As well as informing vaccine strategies and highlighting which patients need to remain cautious, the study will also identify those who should be prioritised for alternative treatments like monoclonal antibodies, or trials that are testing additional ways to protect patients from Covid-19, such as PROTECT-V. This is a study we are helping to fund which is investigating whether niclosamide, a drug usually used to treat tapeworms, can prevent Covid-19 infection in vulnerable, high-risk kidney patients.

Early analysis of studies into Covid-19 vaccine third doses in transplant patients in other countries suggests that up to 25% of these patients may remain unprotected.

In the UK, approximately 60% of transplant patients received the Oxford-AstraZeneca vaccine in the initial rollout. This study will provide crucial information as there is currently no data available on responses to third dose vaccines after immunisation with the Oxford-AstraZeneca vaccine in immunocompromised patients.

Researchers will measure whether patients have developed antibodies (proteins that are produced by the body’s immune system to help fight against infection) against the virus that causes Covid-19.

Participants also complete a questionnaire online, including questions about patient demographics, details of immunosuppressive treatments and patient behaviour which will then be linked to antibody results.

Dr Aisling McMahon, executive director of research, innovation and policy at Kidney Research UK said: “This is the only study we are aware of that will identify this vulnerable group of patients, who remain at increased risk of hospitalisation and mortality. It will allow doctors to suggest alternative protective measures for some people, and also identify those who may be eligible for enrolment in alternative therapeutic studies as they become available.”

Keep track of our Covid-19 research and patient information here: www.kidneyresearchuk.org

Elaine was 57 and lived a full and active life as a supportive mum, a loving sister and partner, a wonderful colleague and determined fundraiser.

“We miss Elaine terribly, she was the heart and soul of our family,” says Jim. “One moment she was a fit person living with a successful kidney transplant, diligently doing her “10,000 steps” daily. Next she was gone, and it’s hard to imagine she won’t be a part of our lives any more.”

Kidney disease is hugely prevalent in Jim’s family. Nine family members have had transplants in the last 40 years, with three still surviving. Sadly, having lost Elaine, only a few weeks later her kidney transplanted cousin living in California also contracted Covid, and passed away shortly afterwards in almost identical circumstances to Elaine, doubling the family’s sorrow.

Jim says: “We just don’t know if the third or fourth dose is helping protect us any better.”

“I’m glad the MELODY study is going ahead and I hope the information it produces can help prevent more families going through what we have.

“As a dedicated fundraiser for and supporter of kidney research, I know Elaine would be delighted to see Kidney Research UK support this vital piece of work.”

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Alport syndrome

Pioneering new programme to drive Alport syndrome research.

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n partnership with the Stoneygate Trust, we are launching a new programme to accelerate research, transform early diagnosis and develop specific treatments for Alport syndrome.

The programme is designed to make sure the best research happens with the best researchers in the most efficient way, with the hope this model of funding could become a blueprint for tackling many different kidney diseases and conditions in the future.

What is Alport syndrome?

Alport syndrome is a rare genetic disorder, but it’s the second most common cause of inherited chronic kidney disease after polycystic kidney disease.

It is caused by faults in the genetic code for a particular type of collagen protein essential to the structure and function of the kidney’s filtering system. Disruption of this protein causes progressive loss of kidney function. It can also cause hearing loss and eye problems.

Thanks to better genetic testing and the use of drugs called ACE inhibitors, which slow down the loss of kidney function, the diagnosis and treatment of Alport syndrome have improved in the last decade. However, these drugs only delay disease progression; more progress is urgently needed to find a cure. Our researchers have the expertise, passion and skills needed to accelerate progress – this new programme means we should see major advances within the next decade.

We know that by bringing together some of the world’s leading researchers in Alport syndrome and providing a base with a wealth of facilities and expertise, we will accelerate the discovery and testing of new treatments.

Professor Rachel Lennon

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

Sandra Currie

Explaining the hub With a £2.55 million investment from the Stoneygate Trust, we are establishing a UK hub for Alport syndrome in early 2022.

The hub will be directed by Professor Rachel Lennon from the University of Manchester, in collaboration with Professor Daniel Gale from University College London and Professor Neil Turner from the University of Edinburgh, all hugely accomplished leaders in the field.

Neil Turner The hub will be made up of: c A physical hub for research to develop new therapies based in Rachel’s lab in Manchester. Rachel’s lab has all the expertise and resources a researcher could need to study Alport syndrome and test potential new treatments, including animal models and miniature kidneys in dishes. Rachel also has excellent links with patient groups. This funding will go into specific projects, meaning they can hit the ground running with no delays or teething problems! c A virtual hub, led by Daniel, using the national registry of rare kidney diseases RaDaR, with data from over 850 patients with abnormal Alport genes to help understand both the genetic and environmental factors that affect, and may predict, how quickly Alport syndrome progresses.

The programme will include two research projects to start with: one looking at the possibility of gene therapy for Alport syndrome, and one searching for new, more sensitive, biomarkers for disease progression in blood and urine.

There is also funding available to invest in three new project grants to encourage innovative ideas and nurture new researchers in their academic careers in the kidney field.

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to be leading this initiative from a physical hub and to integrate with a vibrant virtual network of Alport researchers in the UK.” Daniel said: “I am delighted to be part of this exciting project. Rare diseases can have a devastating impact on the lives of people affected but, because they are rare, sometimes they lack the critical mass of researchers Daniel Gale studying them needed to enable rapid improvements in treatment. This new hub will help address this for Alport syndrome by providing infrastructure and support that will catalyse large-scale, high quality and innovative research which will hopefully have a big impact on treatments in the future.”

What could this mean for patients?

By bringing together the best ideas, expertise and resources, this programme should really accelerate progress and translation of research findings into improved clinical interventions. It could begin to produce important results as early as 3 years in, with potential to have major impact in 5-10 years.

Sandra Currie, chief executive of Kidney Research UK said: “We are excited to be embarking on this new collaborative way of working, and extremely grateful that the trustees of Stoneygate Trust have been so supportive of this pioneering approach.

We know that by bringing together some of the world’s leading researchers in Alport syndrome and providing a base with a wealth of facilities and expertise, we will accelerate the discovery and testing of new treatments. This will bring improved prospects for everyone diagnosed and may even lead to gene therapy to minimise the effect of the syndrome for families across the world.”

Rachel, director of the Alport research hub said: “This Kidney Research UKStoneygate award to establish a UK hub for Alport research is fabulous news and will transform our ability to increase awareness, improve understanding of the condition and accelerate new treatment options for patients. It is a huge privilege

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Kidney donation

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hen ‘Married At First Sight’ TV star Marilyse Corrigan discovered her ex-partner Shaun needed a kidney transplant, she didn’t hesitate to offer one of her own.

Shaun, the father of Marilyse’s two children, Josh, 13, and Callum, 16, had suffered from polycystic kidney disease for years. In 2019, he was told he needed a transplant.

“I felt it was my responsibility to help out, especially when his own family members weren’t a match for him,” says Marilyse, 37. “We haven’t been together for about 10 years, but I still care for him and I hated seeing my children so upset about their dad.

About two and half years ago, Shaun’s kidney function declined and he had to go on dialysis. That meant it was hard for them to do normal things like go swimming or go on holiday together, and Shaun looked really unwell. His face was grey.

I lost my dad when I was the same age Callum is now, and that really motivated me to offer up my own kidney.

Reality TV star faces the reality of organ donation.

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate

“Years ago, when we were still together, I’d told Shaun when the time came, I’d happily donate a kidney for him. Now, even though we’re no longer together, I still see him as a family member. I lost my dad when I was the same age Callum is now, and that really motivated me to offer up my own kidney.”

Marilyse says, “Before the operation my children told me how much they appreciated what I was doing for their dad, and how much they loved me. It must have been scary knowing both parents would be in surgery on the same day, but they were so supportive. Afterwards they said to me, ‘Mum, that was like the longest day ever.’”

In the run up to the operation, Marilyse felt anxious. “It hung over me for weeks and weeks, because I felt everything was reliant on me. Life felt like it was on standstill. But then on the morning of the operation I was strangely calm and relieved it was going ahead.

“My brother drove me and Shaun to the hospital. We were in different buildings so we hugged each other goodbye and said good luck. Both of our operations went really well.”

Often recovery from the operation can be more of a challenge for the person donating the kidney rather than the recipient. Marilyse says, “When I saw Shaun the following day, he looked like a different person. He already had the colour back in his face, while I felt like I was dying!”

Speaking to us two weeks post-transplant, however, Marilyse is almost back to full fitness. She says, “For the first few days, I had to sleep on my back, but now I can sleep on my side again. I’m going out with friends and everything is normal again bar the fact I’m not 100 per cent back to my usual fitness regime. Even the scar’s not really that bad.”

Meanwhile, Shaun is also recovering well while the donor kidney settles down. Marilyse says, “He has to take a lot of tablets and still goes to the hospital three times a week for check-ups. But he’s had his dialysis lines taken out which will be really nice for him.”

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Before this, I didn’t realise how common kidney disease was and it’s been great to get the opportunity to raise awareness.

Since going public with her story, Marilyse has heard from many people up and down the country. “Before this, I didn’t realise how common kidney disease was and it’s been great to get the opportunity to raise awareness and also reassure people,” she says. “I’m happy to chat to anyone going through the same thing as me.”

“It’s just so wonderful for the boys to have their dad back.”

Now, Marilyse has joined forces with us to help spread the word further. “This is the charity Shaun supports, and I wanted to do my bit and keep that involvement going. The work they do to help kidney patients is amazing, helping make more kidneys available for transplant and making transplants last longer.

I’m planning to take on some big challenges for the charity this year – from abseiling down the UK’s tallest sculpture to trekking across the UK’s highest three peaks, to running the London Marathon. I can’t wait to get stuck in.”

Inspired by Marilyse? Find out what challenges you could take on to help us transform treatments: www.kidneyresearchuk.org/events

After tests were completed, Marilyse, who lives in Yorkshire, was told that although she was a match, her kidney was too small for Shaun’s body.

“Doctors told me that there was another option – the kidney sharing scheme. My first reaction was, ‘I don’t want my kidney in a stranger’s body’. But then I thought, ‘Why not?’ I just want to help him live and it doesn’t matter if it comes from me or someone else’s body.”

The way the scheme works is that a few times a year, people in the scheme are ‘matched’ to each other. Marilyse donated her kidney to someone else, and their donor gave theirs to Shaun. The four-way operation took place in November this year.

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Research studies

Research studies

With a patient pool which better reflects the overall kidney population, we can ensure that the future of kidney treatment is applicable and appropriate for all patients.

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With a patient pool which better reflects the overall kidney population, we can ensure that the future of kidney treatment is applicable and appropriate for all patients.

Dr Smeeta Sinha

Research volunteers living with and without kidney disease will be given a range of options for getting involved in research, from surveys, to focus groups, to clinical trials.

Dr Smeeta Sinha

Boosting diversity in research studies.

Research studies must be representative of the groups of people they are designed to help. We’re supporting a new project to help create more diversity among kidney research participants.

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ecruitment for a landmark new study is underway across Salford, Oldham and Rochdale, in Greater Manchester. With the support of Kidney Research UK, the Northern Care Alliance NHS Foundation Trust is embarking on a novel project to help increase representation of marginalised groups within major kidney research projects.

Focusing on groups most at-risk of kidney disease, the project will attempt to engage people of all ethnicities from poorer areas of Salford as well as the Pakistani communities in Oldham and Bangladeshi communities across Rochdale. Whilst attempting to break down misconceptions and fears around participating in vital research, volunteers will be encouraging members of the community to sign up to receive information and invitations to future research studies.

The Salford Project will take a unique approach by exclusively using the charity’s

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate

multi award-winning ‘peer educator’ initiative to engage with each group.

Peer educators are people with a connection to kidney disease, recruited as volunteers from within the communities they are engaging with. They will embark on a detailed training course to identify taboo topics, share detailed information and learn how to explain to at-risk communities the process and the benefits of taking part in research.

Working with communities Kidney Research UK’s health equalities programme manager, Neerja Jain, has been involved in previous peer educator activities and is a keen advocate of the method. “Our peer educator approach has seen great success when educating communities on kidney health and dispelling health and scientific misinformation,” she says. “Not only do we

make sure that the people we recruit are representative of the areas we want to engage with, but our volunteers are often well-known members of the community and trusted amongst their peers.”

kidney transplant. These statistics further highlight the importance of the project’s ambition to increase representation of these marginalised groups in future research projects.

Strategies are put in place to ensure that the peer educators’ voices are able to resonate and influence the communities they represent. Kidney Research UK’s programme seeks to recruit those who not only represent their community but are also engaged and influential members of their communities. This focus may mean that recruitment for each project is longer, but volunteers’ influential profile ensures that the message around participating in research is more likely to be listened to.

“We all understand just how vital research into kidney disease is and the individuals who participate help us to accelerate and transform future treatments,” said Neerja Jain Dr Smeeta Sinha, consultant nephrologist at Salford Royal Hospital, part of the Northern Care Alliance NHS Foundation Trust.

“Unfortunately, the patient population that we currently recruit rarely reflects the diverse make-up of the kidney community, with the vast majority coming from white and middle-class backgrounds. With a patient pool which better reflects the overall kidney population, we can ensure that the future of kidney treatment is applicable and appropriate for all patients.”

Improving representation of those at risk Currently, people from poorer communities are more likely to develop chronic kidney disease, progress faster towards kidney failure and often die earlier with the disease than people from more affluent backgrounds. In addition, those from black and South Asian populations are more likely to progress faster towards kidney failure while also being less likely to receive a

Among a number of recommendations from Kidney Research UK’s Health Inequalities report, is the key need to increase participation in renal research from under-represented groups.

Tackling mistrust For many marginalised communities, participating in research continues to be a taboo topic. Historic fears around experimentation, concerns over whether research will be supported by their religion and a general mistrust of the institutions of government and the health system feed into why people from some groups pass on the opportunity to participate in research.

Neerja Jain continued; “It is impossible to pin the hesitancy towards research down to a single issue, rather communities often cite a number of historical, cultural and faith-based concerns that prevent them from taking part in vital research. Through the Salford Project however, we hope to be able to dismantle these barriers with an evidence-based approach through our trusted and passionate volunteers.”

Recruitment for the project volunteers is still ongoing. If you are from the lower economic areas in Salford, or if you are a member of the Pakistani community in Oldham or from the Bengali community in Rochdale and wish to participate, please contact programme manager, Neerja Jain by email: neerjajain@ kidneyresearchuk.org or call or message: 07810 555 844.

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Patient care

A revolution in older patient care begins.

A new study aims to understand the impact of kidney disease and transplantation on older people.

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oday, adults of any age being put forward for the kidney transplant waiting list will have exactly the same series of tests and assessments. But Dr Amarpreet Thind and her team – led by Professor Edwina Brown and Dr Michelle Willicombe at Imperial College London – believe that a much more bespoke assessment process is needed that considers the different needs and experiences of older people. This was the inspiration for the Kidney Transplantation in Older People (KTOP) research study, which we are proud to fund in partnership with the Stoneygate Trust.

Amarpreet explains: “Current transplantation guidance doesn’t really incorporate assessments looking for the presence of frailty and how that might impact the patient’s experience of a major surgery. It doesn’t include cognitive assessments to check, for example, how well their memory is functioning.”

These and many other factors present in older people, can make a big impact on the outcome of the transplant.

Dr Amarpreet Thind

A multidisciplinary approach To help improve the guidance, Amarpreet and the KTOP team are using a series of questionnaires to better understand patient’s experiences.

They brought in specialists from many different backgrounds: kidney doctors, a transplant surgeon, geriatric consultants, an occupational therapist, a pharmacist, a nurse, a statistician, and a kidney transplant patient. “It’s a huge multidisciplinary collaborative group,” Amarpreet says. “The group has helped with the design of the study, choosing the right questions and continue to provide invaluable support to the study.”

To provide an even deeper level of understanding, there will be personal interviews with some of the patients who have degrees of frailty.

Over 200 people are taking part in the study. They are aged over 60 and are on the transplant waiting list. Over the course of the three-year project, participants will have several

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

assessments to understand in detail their experience of dialysis, its impact on their lives, and their experiences of transplantation if they have the surgery.

An improved experience for patients and doctors Amarpreet hopes that with greater levels of understanding, doctors will be able to paint a much more accurate picture of what the transplant and post-surgery treatment will be like for the patient. “People have a lot of expectations around a transplant,” she says. “They often think of it as a magic bullet that will get them off dialysis and back to normal life. But it’s not as simple as that. The transplant operation and the medication that follows can be challenging for a patient of any age, but more so for older people.”

The new guidance will help doctors understand better who would do well with a transplant or who might do less well, and importantly, to be aware of changing circumstances in a patient’s life and how they can be best supported: “For older patients, their situations can change quickly,” explains Amarpreet. “One hospital admission could take you from being able to do everything to suddenly doing a lot less. Hopefully we’ll be able to provide a set of assessments that can help improve who we’re putting forward for kidney transplantation, to make sure that it’s the right people, and that the right support is in place when they go through the process.”

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A passion for care Amarpreet was drawn to renal care as a practice because she enjoyed the rapport and relationships that develop when working with the same people every week for treatment over a long period of time.

The more patients she worked with, the more she saw how different everyone’s experience of kidney disease was.

She says “There’s a big spectrum. I realised that understanding patients better and how kidney disease really affects them was something that I was particularly interested in. So when my supervisors, Professor Edwina Brown and Dr Michelle Willicombe, told me about the KTOP research project they were trying to get funded, and what was involved, it really appealed to me.”

Amarpreet says that without gifts from Kidney Research UK supporters, this project would never have happened. “The funding means everything to me and the team.

Clearly, we need clinical research projects like this. We need to be looking at patient experience and translating what we learn into tangible, positive outcomes for people.”

The study is due to complete later this year.

Amarpreet says she’s been thrilled with the enthusiastic response from the patients taking part: “What’s been really clear is that they’ve really relished the opportunity to talk about kidney disease and how it affects them.”

We need to be looking at patient experience and translating what we learn into tangible, positive outcomes for people.

Projects like the KTOP study are vital to help avoid the pain, fear and distress that thousands of people living with kidney disease experience. This is why we are aiming to raise £3m to help transform treatments. Visit www.kidneyresearchuk.org/transform-treatments to find out how you can help us make a radical difference, now.

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Research round up

Research round up

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Research in action.

After a difficult year, we are thrilled to have awarded many grants for new research.

Here are some of the exciting grants we have funded this financial year.

Our research project grants are awarded to stand-alone research projects that will advance our knowledge of kidney disease and refine current treatments or lead to new advances in the future. Our innovation grants support new areas of clinical or scientific research where initial data is still required.

Investigating potential treatments for childhood cystic kidney disease

Identifying kidney transplant patients at risk of disease caused by virus

How genes and steroids impact blood pressure rhythms

Nanomedicines to treat kidney inflammation

Nephronophthisis (NPHP) is an inherited condition that causes scarring and cysts to form in the kidney. It is the most common genetic cause of kidney failure in children and young adults. Beyond dialysis and transplantation there are currently no treatment options, and many children will require a kidney transplant before they turn ten.

The majority of people in the UK have been infected with human cytomegalovirus (HCMV) at some point in their lives and most people won’t even know it. However, the virus remains in the body where it is controlled by the immune system, unless the immune system is compromised. This is the case following kidney transplant and HCMV can be reactivated and can cause a severe illness affecting many organs.

Our blood pressure has a daily rhythm, in healthy individuals it is over 10% lower at night than during the day. This night-time dip is reduced or absent in the majority of patients with chronic kidney disease or kidney transplants. This ‘non-dipping’ is linked with increased risk of heart and vessel disease and worsening kidney disease.

Glomerulonephritis is an autoimmune disease in which the immune system attacks the kidney, leading to inflammation, and it is a common cause of kidney failure. Current treatments aim to suppress the immune system to prevent kidney inflammation, but these treatments are not always effective, and many patients experience harmful side effects.

Steroid hormones are important and effective drugs for treating inflammatory kidney disease and they are also used as part of immunosuppression therapy after transplant, but we know they can also cause non-dipping.

Nanomedicines are microscopic ‘carrier’ particles that deliver drugs directly to the organs or tissues where they are needed in the body.

Professor John Sayer and his team at Newcastle University have significantly increased our understanding of NPHP in recent years.

They have developed animal models that carry the gene faults seen in patients and they have also developed a way to grow kidney cells taken from patient urine samples. They have identified several promising treatments, but as yet, none of these treatments have been suitable for treating all patients.

The team has been searching for potential broad-spectrum drug treatments that could be used to treat all NPHP patients. They tested 1,120 drugs and found that a number of them could restore diseased mouse cells to normal. The team then found that 12 of these were able to treat patient cells.

We have awarded John a project grant to analyse these 12 drugs in kidney cells taken from a number of different NPHP patients who have different faults in their genes. The team will also test these drugs in their mouse models of NPHP.

We currently don’t know who will go on to develop HCMV disease after transplant so all patients are given anti-viral medication for the first few months following their transplant, but these drugs can have nasty side effects.

We have awarded Dr Eddie Chung Yern Wang from Cardiff University a research project grant to analyse the whole genetic code of viruses from different patients to find out whether genetic differences in the viruses can explain the differences in the severity of the disease.

The team will also study immune cells called natural killer (NK) cells. In healthy people, these cells help to control the virus and the team will investigate whether differences in the numbers and type of NK cells affect a patient’s ability to control HCMV infection. They will also look at how genetic differences in HCMV link up with differences in NK cells.

If successful, this work could lead to a new treatment for people with NPHP.

This research will reveal factors in HCMV and/or the patient that can predict who will get disease, and why. With this knowledge, healthcare professionals should be able to prescribe anti-viral drugs only for those who need them and avoid unnecessary treatment for those who do not.

John’s work is funded by a research project grant from Kidney Research UK for £225,000

Eddie’s work is funded by a research project grant from Kidney Research UK for £230,000

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Blood vessels in the kidney are important for regulating blood pressure but we know very little about the rhythms that occur in them. We have awarded Dr Jess Ivy from the University of Edinburgh an innovation grant to investigate how steroid hormones change blood pressure rhythms. Jess and her team have recently shown that kidney arteries change how much they constrict or relax depending on the time of day, which in turn may lead to the changes in blood pressure rhythm.

The team will perform genetic analysis of mouse renal arteries over a 24-hour period to understand which genes show a rhythmic behaviour, which might indicate which genes are responsible for time-of-day differences in blood pressure. They will also study which genes are affected by steroid treatment.

Dr Steve McAdoo and his colleagues at Imperial College London have previously designed a nanomedicine to carry a ‘repair protein’ specifically to sections of diseased blood vessels affected by atherosclerosis (a disease that occurs when fatty material collects in the lining of blood vessels, causing inflammation). The repair protein was then able to reduce inflammation in the affected vessels.

We have awarded Steve an innovation grant to apply this approach to treat inflammation in the kidney. The team will test the effect of nanoparticles carrying a repair protein in laboratory rats that have a form of glomerulonephritis that mimics disease in humans. The team will test whether the particles get to the correct place in the kidneys, whether they are effective at treating the disease, and how they affect the immune cells that cause kidney inflammation.

This work may lead to the development of drugs to fix blood pressure rhythm abnormalities in kidney patients.

This novel approach may provide an innovative way to improve drug efficiency while reducing potential side effects in a number of autoimmune and inflammatory kidney diseases in the future.

Jess’s research is funded by an innovation grant from Kidney Research UK for £40,000

Steve’s research is funded by an innovation grant from Kidney Research UK for £40,000

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gala dinner

A Night Of Curiosity, Magic & Transformation

In support of our campaign

transforming Treatments

Saturday 9 April 2022 6.30pm until late Join us at The Brewery, London, for a magical evening and play your part in the fight to end kidney disease.

Tickets and table packages now available to book.

For more details, please visit: www.kidneyresearchuk.org/gala-dinner or email: specialevents@kidneyresearchuk.org