Update: Autumn 2016, Issue 11

Autumn 2016 Issue 11

THE MAGAZINE FROM KIDNEY RESEARCH UK

MATTHEW FINDS HIS HERO PAGE 02

Give twice this Christmas

‘Modest’ investment could save lives around the world

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04

The research implications of Brexit: we’re part of the conversation

10

Welcome Brexit, kidney cancer and heart problems

A warm welcome to our Autumn edition of Update magazine.

Whilst this magazine reports that the transplant waiting list has fallen – this should be taken with some perspective as it fluctuates month by month.

And although there appears to be a positive trend, looking deeper into the stats does reveal inequalities within the waiting list that still need urgent attention.

This summer we met with many of our supporters at receptions and events and there was a recurring theme in your questions to us – how will Brexit affect our work? To help get a bigger picture on this we asked Lord Sharkey, the Chair of the Association of Medical Research Charities, to help unpick the future for medical research in the UK.

Transplant games What with the Olympics and Para Olympics, it’s been a great year for medals in sports for the UK. And Kidney Research UK has also celebrated being on the winners podium.

Earlier in the summer, Team Kidney took part for the very first time in the British Transplant Games. Transplant patients, Sarah Harwood and Jacob Clarke, represented us, and together with a loudly cheering team of supporters, competed in badminton, tennis, archery, darts and athletics. Sarah won two medals in archery and shot put!

Taking place each year since 1978, the British Transplant games remind people of the importance of organ donation and the ways it can transform lives. People from all over the UK compete in a range of sports and come together at social events to celebrate what it means to give or receive a donated organ. This year’s event, held in Liverpool, saw around 2,500 people celebrate their achievements.

Looking at the here and now we have some exciting developments to report that could soon be benefitting patients with kidney cancer and heart problems. Professor John Bradley talks us through the delicate steps towards developing new treatments for kidney cancer, ones that he hopes will enhance the body’s immune response to chemotherapy. If this wasn’t promising enough, Professor Philip Kalra tells us about how his team’s studies may change the way hospitals around the world assess dialysis patients for potential heart problems – a great result from a relatively small investment of your money.

If you have any comments or messages for the researchers featured in this edition of Update, please do email or write to us and we’ll ensure they are passed on.

Finally, a thank you to all our supporters and readers, however you support us, you really make the difference.

Alex

Alex Wheldon, Editor pressoffice@kidneyresearchuk.org

Contributors Allison Parkinson Harriet Williams Sarah Williams Lawrence Keogh Public Health England Cocktail Marketing The Pietrzyk family University of Manchester

Designed by www.adeptdesign.co.uk Contact us Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ Tel: 0300 303 1100 www.kidneyresearchuk.org

Find out more: www.kidneyresearchuk.org

Matthew finds his hero Little Matthew Pietrzyk was born with congenital nephrotic syndrome and had been waiting his whole life to find a suitable match for a kidney transplant.

Following a worldwide social media campaign led by his parents, Matthew has finally been given his wish.

The 11 year-old from Leicestershire has been given the chance of life after stranger Edward Batch, who lived just a few miles away, came forward and was found to be the perfect match.

In May this year, Edward who had messaged the family on Facebook saying ‘I have a spare kidney if it helps’, was confirmed as being the 1 in 650,000 match the family had been waiting for. The transplant finally took place in July.

You’ll never guess what......

Matthew has found his hero!!!!!!!

Matthew’s mum Nicola via Facebook

NEWSROUND // P03

Give twice this Kidney transplant CHRISTMAS waiting list falls

There is not long to go until Christmas and you can make it extra special this year by buying your cards from our shop.

We have a fantastic range of cards, gift wrap, crackers and stocking fillers available in our online shop. Hurry, you only have until 9 December to get your orders in!

Visit www.kidneyresearchuk.org/shop to see the full range.

The transplant waiting list for kidney patients fell by 7% in the past year. As of 4 November 5,254 were waiting for a new kidney.

This is due to the highest ever number of people donating organs after death, according to NHS Blood and Transplant.

1,364 people became organ donors (up 6%) when they died between April 2015 and March 2016, with 95% donating at least one kidney.

This resulted in 2,228 transplanted kidneys.

However, the NHS says that the UK still lags behind much of Europe for families consenting to organ donation, resulting in many patients waiting for too long, and 282 patients dying whilst on the kidney transplant waiting list.

People needing transplants 5,254 526 393 254 217

Diary dates

Bungee Jump at O2 Arena Saturday 17 December

World Kidney Day Thursday 9 March

Manchester Marathon Sunday 2 April

London Marathon Sunday 23 April

London Bridges Walk Sunday 2 July

British 10K

Sunday 9 July (TBC)

Ride 100

Sunday 30 July

Call our donation line: 0800 783 2973

HOW YOUR MONEY’S HELPED // P04 2D

Our ‘modest’ investment could help save lives around the world Scientists at Salford Royal Hospital and the University of Manchester are celebrating the phenomenal success of a clinical research study which could, ultimately, have global implications.

In 2012, a team led by Professor Philip Kalra and including Dr Diana Chiu and Dr Darren Green, secured £172,075 funding from Kidney Research UK for a three-year research project.

They aimed to investigate whether they could use simple bedside tests to identify haemodialysis patients who were at increased risk of cardiovascular complications, including sudden cardiac death.

Four years on, and already just a fraction of the findings have formed the basis of six research papers which have appeared or are due to appear in high-quality journals.

The team have also shared this information with kidney experts at six major national and international renal conferences, to date.

I certainly have never been involved in anything as successful in terms of the number of research points and peer-reviewed publications that are being generated by the study.

Professor Philip Kalra

Find out more: www.kidneyresearchuk.org

The team are still accumulating information from the study but, from the interest generated already, its composite findings may change the way hospitals around the world assess dialysis patients for potential heart problems.

“The success of this project owes a lot to our strong research team of CRN funded research nurses, dedicated research fellows like Dr Chiu, and innovative co-investigators like Dr Green,” says Professor Kalra, who chairs the National Institute for Health Research’s Renal division and who is the Academic Vice President of the Renal Association. “I certainly have never been involved in anything as successful in terms of the number of research points and peer-reviewed publications that are being generated by the study. This emphasises that a modest amount of funding can lead to great successes if the right clinical study is undertaken diligently and by a dedicated team, which includes our patients who have been amazingly engaged.”

Around 14 per cent of patients on dialysis in the UK die every year and, of those, up to a quarter are thought to die suddenly and unexpectedly but, at the moment, there is no way to predict who this may happen to.

Professor Philip Kalra

“Kidney patients on dialysis often have abnormal heart structure and function,” says Dr Chiu, who developed a PhD around the studies. “So we wanted to find out if it was possible for us to detect early changes in the heart and so predict which patients were more likely to be at risk of serious heart problems.”

They recruited 219 patients, aged between 18 and 91, for the study. All were receiving haemodialysis at the Salford Royal NHS Foundation Trust or at one of its four satellite renal units in Bolton, Wigan, Oldham and Rochdale.

The patients were given conventional heart tests; echocardiograms (ultrasound scans of their hearts) and electrocardiograms (tests to monitor heart rhythm and electrical activity) on nondialysis days, over a three-year period.

Within these tests, the team tried out new methods of analysing the information to see if they could get new and more detailed markers of risk.

3D

HOW YOUR MONEY’S HELPED // P05

Thrombus

The next step

The first project will involve the continuation of echocardiograms on the study group. The aim is to assess whether changes in cardiac function over time is a better predictor of risk compared with data from the study group at one moment in time. It will also hopefully lead to an increased understanding of how heart function and structure changes with time in dialysis patients.

Pacemaker Wire

A new 3D echo scan enabled the team to identify a blood clot (or thrombus) in one patient’s heart.

This was not visible in the conventional 2D scan

“During the course of the study, abnormalities were detected using these baseline tests and we were able to refer patients to seek early cardiology attention – so patients have actually benefitted directly from participating in the study,” says Dr Chiu.

“So rather than saying: ‘Here’s this person on this particular day; what’s their risk?’ it’s more about saying: ‘If you assess a patient long-term can you monitor these tests in a unique way to look at risk?’

“Clinicians often focus on one particular marker such as a blood test or a blood pressure reading to assess risk, whereas what the next round of papers from this study will be doing is looking at all of these tests together (traditional blood tests, blood pressure readings, phosphate tests, standard echo tests and echoes using new technologies). It’s about putting all of these into a model to see whether or not these new technologies can add anything to existing assessments.”

The team also observed that patients who did not wish to enter the study appeared to have worse outcomes than those who did.

Dr Diana Chiu

“We also discovered that a new echo method called global longitudinal strain was good at finding abnormalities in the heart in patients whose heart function was otherwise considered ‘normal’ by routine echo techniques.

Four follow on projects have now been planned.

“Voluntary participation by patients is a pillar of all clinical research studies. This finding opens the door for more detailed qualitative study of the reasons behind why patients might wish to, or not wish to, participate in straight forward large-scale observational studies,” says Professor Kalra.

“Another faster technique called tissue motion annular displacement was also useful for looking for subtle heart abnormalities 3D echoes found changes in dialysis patients which may indicate which patients are more likely to be admitted to hospital with heart failure. Further studies will need to be carried out to explore these findings further.”

“It was important for us to be able to look at change over time,” says Dr Green.

The second project will involve studying a sub group of patients who have had kidney transplants to see whether there are changes to heart function before and after transplantation. There is currently very little long-term data of this sort and this project will hopefully add to the knowledge of how kidney transplantation affects the heart.

Each of the patients in the study also underwent a basic ECG recording at every time point, and the team are now investigating whether changes in the ECG add extra dimensions to risk prediction in parallel with the structural and functional heart abnormalities noted with echocardiography.

The final project, which the team is still seeking funding for, is to carry out a similar set of heart tests on a new, larger group of patients. They aim to test the patients 12 months before they start their dialysis treatment, when they actually start dialysis, and 12 months into their dialysis treatment. The team want to find out whether starting dialysis treatment has any impact on patients’ heart function and whether there is any difference between patients on haemodialysis or peritoneal dialysis.

They have many years of research ahead of them but the team hope that their work will eventually lead to improved treatments for heart problems that will dramatically reduce the risk of sudden death in dialysis patients.

Help us change more lives Please help us fund more projects that will make a real difference to kidney patients’ lives. Make a donation today at www.kidneyresearchuk.org/donate or call: 0800 783 2973

The team used several new methods to analyse scans, including speckle tracking analysis which measures the motion of tissues in the heart

Call our donation line: 0800 783 2973

THE BIG INTERVIEW // P06

We’re edging closer to a cure for kidney cancer Dr John Bradley

Professor John Bradley and his team at Addenbrooke’s Hospital in Cambridge have spent many years trying to unlock the secrets of kidney cancer – a devastating condition that is often resistant to chemotherapy and radiotherapy.

Find out more: www.kidneyresearchuk.org

They have made many remarkable discoveries along the way and frequently work in collaboration with other teams and funding partners.

His work is based around a special protein called TNF, which is found in the blood and is part of the body’s natural defence against infection. In an earlier study, his team discovered that TNF binds itself to cells and sends them signals telling them to do different things. TNF can tell cells to die, or to divide and grow. This implied that

by controlling the signals the TNF sends, it might be possible to effectively command kidney cells to grow or die.

The next stage of this vital research has now been completed, thanks to joint funding from Kidney Research UK and the Garfield Weston Foundation – a family-founded, grant-making trust which has been supporting charities across the UK for over 50 years.

We caught up with John recently to talk about his latest discoveries and the benefits of working with research and funding partners.

THE BIG INTERVIEW // P07

Q

What was the objective of your most recent study?

The TNF molecule has many different functions. It can cause cells to grow and divide, it can cause cells to die and in some circumstances it can trigger pathways that cause inflammation. There is some evidence to suggest that anti-TNF treatment (drugs that alter responses to the TNF protein in inflammatory conditions like arthritis, inflammatory bowel disease and psoriasis) might be effective against kidney cancer.

So we set out to look at whether we could find common genetic variations in the way healthy people and those with kidney cancer respond to TNF.

Q

How did you test for this?

We used blood samples from 40 donors and analysed tissue from 15 kidney tumours, together with non-cancerous tissue from the same kidneys.

Q

What did you discover?

So by defining how TNF can modulate the fate of cells, this research has given us further important insights into how drugs that alter cell responses to TNF could eventually be used to treat cancer – possibly as a substance which enhances the body’s immune response to chemotherapy.

Q

So how far off might treatments be?

There’s still a lot of research to be done before potential treatments are developed because the whole picture is very complex. These TNF molecules are certainly very important to the evolution of cancer.

We now plan to define these pathways a little bit further in the lab. We will then start thinking about setting up clinical trials that might involve these molecules.

Q

How important is joint working and joint funding to your studies?

I think it is vital. Funding from Garfield Weston and Kidney Research UK has enabled us to considerably advance our understanding of how TNF works. This would not have been possible without their collaboration.

Our work relies on a range of funding partnerships. For example, for the genetic studies we used the resources of the National Institute for Health Research (NIHR) BioResource. All of this funding is crucial – from individual donations by supporters to large-scale grants – and all of it is greatly appreciated.

Q

Could this work have broader implications than kidney cancer?

Yes, TNF could eventually be used to treat other types of cancer. It may even be possible to repair damaged kidneys by stimulating cell growth and division.

Well, we did find some genetic differences but they were small and not likely to be important, but as we were exploring those differences we found some other interesting observations: Firstly, if you look at kidney cancer there are, surprisingly, a lot of stem cells. Some people think that the stem cells are one of the reasons why it is difficult to treat kidney cancer because they sit around and don’t do much. Most of the treatments we use for cancer are aimed at killing cancer cells as they grow, and they rely on the cells dividing, so if you’ve got a population of stem cells in the cancer and they’re just sitting there and not doing anything, then it might be difficult to kill them. So what we showed was that if you treat these cells in a way that will, through TNF, stimulate them to grow and divide then it’s easier to kill them.

Secondly, we discovered that TNF appears to be an important regulator of cell death.

In many cases cells undergo programmed cell death where they just shrink and are eaten up by another cell but there is another method of cell death where the cell just bursts. If the cell bursts that triggers a lot of inflammation and so, if you stimulate a lot of inflammation, that might mean that the tumour becomes more susceptible to the body’s own immune system at attacking it.

In addition, our research has led to a collaboration with MedImmune, a Cambridge-based biotechnology company that is part of AstraZeneca. As part of their investigations into colon cancer, they discovered that TNF could trigger the immune system to prevent tumour growth.

Most of the treatments we use for cancer are aimed at killing cancer cells as they grow, and they rely on the cells dividing.

Call our donation line: 0800 783 2973

HEALTH & LIFESTYLE // P08

Why you should get your flu jab this winter!

The Government has launched its annual flu campaign for 2016/17. This seasonal infection can be very serious for kidney patients and if you’ve received your invitation to a free flu vaccination, do take it.

Here’s what you need to know about flu?

What is flu?

Influenza (flu) is a viral infection with symptoms that can come on very quickly. These can include aches and pains in joints and muscles, fever and chills, coughs and sneezing, sore throats, headaches and extreme tiredness. For most healthy people flu lasts around seven days. However for some, especially those with existing medical conditions, it can be very serious, leading to hospitalisation or even death. Anyone can catch flu.

What causes flu?

Flu is caused by viruses that infect the respiratory system, your windpipe and lungs.

When an infected person coughs or sneezes, Find out more: www.kidneyresearchuk.org

they spread the virus in tiny droplets which are then breathed in by other people. It is also spread by people touching surfaces that the droplets have landed on and then touching their faces.

As flu is a virus and not a bacteria, antibiotics will not be effective against it. The flu jab will.

It is offered free of charge to those at greatest risk at most GP surgeries from the beginning of October onwards.

Who should get the flu vaccination?

If you are in an at risk group, you are more vulnerable to the effects of flu and could develop flu complications such as bronchitis or pneumonia.

I had a flu jab last year, do I need another one?

The flu virus is constantly changing and the vaccine is updated annually so it is important that you have your vaccination each year too.

I’m a carer, what should I do?

If you are a carer having the vaccination will reduce the chances of you getting the flu and help stop spreading it to those you care for, who could become seriously ill as a result. If you haven’t been invited for a flu jab, contact your GP to receive your free vaccination.

You should get the free flu vaccination if you are: c Pregnant c Aged 65 or over c Have lung, heart, kidney, liver or neurological disease c Have a weakened immune system c Have diabetes c Have lowered immunity due to disease or treatment c Have had a stroke or transient ischaemic attack (TIA) c Have a spleen problem.

You should also consider getting vaccinated if you are a carer.

The flu vaccine reduces risk of serious illness, hospitalisation and even death among those who are most at risk.

HEALTH & LIFESTYLE // P09

WHAT CAN YOU DO? Everyone can play their part in helping to reduce the spread of flu. Good hygiene such as covering your mouth and nose when you cough or sneeze can help stop the spread, and washing your hands often or using hand gels can help too.

However the best way to avoid catching and spreading the flu is by having the flu vaccination.

The vaccine is free and is available from your GP.

Recipe You may know Lawrence Keogh as a TV cookery personality. However Lawrence is also a kidney transplant patient. He is passionate about food and healthy eating and has contributed 16 recipes to a cookbook aimed at CKD patients. So if you want to explore more taste and flavour in your own cooking, take a look at our recipes. www.kidneyresearchuk.org/file/Cookbook.pdf

If you are in an at risk group, your GP may recommend taking an antiviral medicine as well.

Always: c Make sure you wash your hands regularly with soap and warm water c Clean surfaces such as your keyboard, telephone and door handles regularly to get rid of germs

Here’s one to warm you this winter:

Beef Rump Steak with Cream Onions and Tarragon Sauce Preparation time: 10 mins Cooking time: 12/15 mins

c Use tissues to cover your mouth and nose when you cough or sneeze

Ingredients:

c Put used tissues in the bin as soon as possible.

c 1 x 4oz/115g rump steak c 100g sliced onions c 2 tsp Worcestershire sauce c 4 fluid oz double cream c 2g picked tarragon leaves c 1g crushed black peppercorns

Don’t put off getting your flu jab; if you’re eligible get it now. It’s free because you need it!

A PATIENT’S PERSPECTIVE: A bout of flu in 2005 led to an emergency hospital admission for kidney patient, Jelina BerlowRahman. She said: “In autumn 2005 I was so busy I didn’t get my flu vaccine when it was offered. Then I caught the flu and it completely knocked me sideways. My whole body ached and I couldn’t move even for the most basic things; I had to be looked after.

“I already had an underlying condition but it seemed to me that having the flu accelerated my kidney failure. I ended up in hospital on dialysis.

Since then I’ve made sure I have the flu vaccine each year. It’s just a quick visit to my GP and then I know that I am protected for the winter.

“If you’ve been invited for your flu jab, don’t ignore it! The flu vaccine could save your life.”

Taking up the flu vaccine not only can reduce people from harm but also can help to ease pressure on health and social care services during the winter. #StayWellThisWinter

1 ves Ser

Method: Season the steak with the crushed peppercorns. Add a little oil to a large frying pan and fry the beef to your liking – I prefer medium rare, as well done steak can be a little dry.

Remove from the pan and keep warm, ideally on a wire rack by a warm oven/grill (when cooked steaks are placed on a flat plate, the juice just pours out, and you’re trying to retain that). Gently fry your sliced onions in the same pan until lightly golden, then add your Worcestershire sauce and reduce by half. Next, add your cream, bring to a gentle simmer (add a little water if it becomes too thick) and add a couple of twists of the pepper mill. To serve, place your steak on a hot plate and pour your sauce over, then sprinkle with the tarragon leaves.

Comments from Harriet: c Beef is a great source of high quality protein.

Generally speaking people with the late stages of kidney disease will be advised to have normal but not excessive amount of protein. People undergoing dialysis will need a little more protein, to replace protein that is lost through the dialysis process. Ask to see a renal dietitian for advice on how much protein you should be eating in a day. c Ingredients such as onions, tarragon and peppercorns are a great way of adding flavour without using salt. c Worcestershire sauce is a very salty ingredient so should be used sparingly, or less often. Here only 2 tsp is used – that’s about 0.3g of salt. People with kidney problems are usually advised to keep to a maximum of 5-6g of salt a day, so on balance the amount used here is ok.

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FOCUS ON... // P10

The research implications of Brexit: we’re part of the conversation

The recent decision to leave the European Union (EU) has thrown up many questions about the future of medical research in the UK – and concerns around the potential impact on patients, public health and the UK economy.

BREXIT – A EUROPEAN RESEARCHER’S VIEW

By Elisa Vasilopoulou Kidney Research UK Fellow University College London What is it like being a European scientist working in the UK? I came from Greece to the UK in 2002 to study biology. Following my university degree, I became interested in scientific research and I have been working in UK universities since 2006, when I started my PhD. I have worked in teams with members from different countries and I have always felt a valued member of the team. Working in UK universities provides a stimulating, exciting and challenging environment for a young scientist.

Unfortunately, we are currently faced with uncertainty about how Brexit will affect scientific research in the UK. Particularly for non-UK Europeans like me our right to continue to live and work in the UK post-Brexit is currently unclear.

Have you experienced any reaction personally or professionally since the Brexit vote?

Following the referendum vote, UCL, like other UK universities, has assured students and staff from other EU countries that they will continue to be as welcome and valued as before. In UK politics however, the focus seems to be on restricting freedom of movement between the UK and the rest of Europe and this makes me and other non-UK Europeans feel not welcome in the UK. What are your hopes or fears for the future of renal research regarding the EU? I am worried that leaving the EU will reduce the funding available for scientific research, including renal research in the coming years. I am also worried that restricting the freedom of movement will make it harder to attract the best scientists from the rest of Europe to the UK and will make collaborations with scientists working in the EU more difficult. I do hope that the negotiations between the UK government and the EU will result in an agreement that will continue with the tradition of collaboration between European countries. This is the best way to promote scientific progress in all fields including renal research.

Lord Sharkey

Find out more: www.kidneyresearchuk.org

FOCUS ON... // P11 Work is well underway to hopefully ensure that patients remain protected and medical research continues to advance and develop in post-Brexit Britain.

Update magazine recently met Lord Sharkey, Chair of the AMRC, to talk about the Association’s ongoing work around the issue of exiting the EU.

Charities, universities, patient organisations, pharmaceutical companies, and other key groups involved in medical and health research, are making individual and joint representations to Government to ensure that their voices are heard by the decision-makers responsible for planning the UK’s future relations with the EU.

“We’re a small country on the edge of Europe yet we are one of the very leading players in the life sciences and in medical research,” says Lord Sharkey.

“This vibrant sector is extremely important to the UK, both in terms of the contribution it makes to the advancement of patient care and treatment and its contribution to our economy. The Association of Medical Research Charities is an important part of all of this because our members have together invested more than £1 billion into UK medical research in each of the past seven years.”

One of the loudest voices belongs to the Association of Medical Research Charities (AMRC) – a membership organisation of the leading medical and health charities funding research in the UK, including Kidney Research UK. It believes that any future relationship with the EU must support the advancement of medical research for the benefit of the health and wellbeing of people in the UK and the EU. And it is calling on the Government to ensure that the UK’s successful medical research sector is able to continue to thrive by:

1

The Association believes that cross-border collaboration is essential to ensure that large pharmaceutical companies continue to regard the United Kingdom as an important and attractive base for their activities. It is also pressing for the continuation of existing cross-border travel and working arrangements for all those linked with research – including researchers, health professionals, technicians and patients.

2

“This would present an opportunity to position the UK as a global

Ensuring the UK medical research community has continued access to EU funding programmes and collaborative opportunities to progress the discovery and understanding of diseases and ill-health. (Also ensuring that overall investment in UK science and research is protected and grown in the longer term).

Protecting patients – so there is no impact on patients in terms of access to treatments, ability to take part in research studies/ trials and standards of care.

science hub with both EU and non-EU partners,” says Lord Sharkey.

“We also need to make certain that there is an aligned and compatible regulatory framework between the UK and the EU for medical research, medicines and medical devices. This is vital in order to avoid duplications and unnecessary burden that may deter companies from launching new treatments and devices in the UK and thus delay access for patients.

“Government makes the point that leaving the EU will open up opportunities that were not available before so there may be opportunities to diverge from EU regulations – particularly where the EU is slow to uptake new and emerging technologies. So, of course, that is something we won’t ignore.”

Lord Sharkey is keen to stress that none of the Association’s comments, calls or recommendations should be seen as antiBrexit.

“This is not a criticism of the Government or indeed a criticism of the decision to leave the EU; we have made that decision. We just want to ensure that we exit the European Union in a way that strengthens our ability to lead the world in medical research, with a view to protecting our patients and maintaining our tradition of successful advances in medical science and the treatment of disease.”

The whole issue of research and Brexit is complex and subject to change, as the Government reveals more detailed exit plans and dates.

But we are determined to have our voices heard, along with the rest of the UK research sector, to ensure that we get the best possible protection, outcomes and new opportunities for our patients, their families and research teams.

3 Maintaining the current ease with which researchers, and those involved in medical research including healthcare professionals, technicians and patients, are able to travel and work across the EU and UK.

4 Ensuring an aligned and compatible regulatory framework between the UK and the EU for medical research.

By having our say, we can ensure that renal research continues to grow from strength to strength in the UK, across Europe and the rest of the world.

Sandra Currie Kidney Research UK Chief Executive

Call our donation line: 0800 783 2973

RESEARCH ROUND UP // P12

Research round up – innovative projects funded by you Your vital donations have helped fund these exciting studies – two of which are about to begin and one that is about to conclude.

Their findings will help to save lives and significantly improve quality of life for people with kidney disease in the UK and overseas.

Unlocking the molecular secrets of inherited kidney disease Results are imminent from an important two and a half year study that has been investigating the cell biology underlying an inherited form of cystic kidney disease, the most common cause of kidney failure in children and young adults.

See how your money can help £3 a month

could help patients like Deborah who waited for three years before a kidney became available.

£7 a month

could fund more researchers like Mike Nicholson who has pioneered a new procedure making more kidneys available for transplant.

£15 a month

could help more children like Daniel who depend on our research to enable them to have a transplant in the future.

Please help us provide ongoing constant support to our brilliant teams of doctors, researchers and nurses carrying out vital research.

Visit: www.kidneyresearchuk.org/support-us Call: 0800 783 2973

Find out more: www.kidneyresearchuk.org

The inherited disease causes fluid-filled cysts to form in the kidneys, eventually blocking their function. The only treatments available are dialysis or a kidney transplant, both of which are extremely expensive and do not represent a long-term cure.

We gave a £134,469 Research Grant to Professor Andrew Fry and his team, from the Department of Molecular and Cell Biology at the University of Leicester, to study two poorly understood proteins – Nek8 and Inversin – which play a key role in kidney development.

These proteins are present in developing kidney cells and coordinate signals that enable the complex structure of a kidney to be made. But in childhood cystic kidney disease patients the proteins do not work properly and send faulty signals that lead to formation of cysts within the kidneys.

The team wanted to understand exactly what goes wrong in kidney cells to make this happen so they ran a series of biochemical and cell-based tests.

They also studied the effect of the abnormal proteins in zebra fish – small tropical freshwater fish which are transparent in early life – to see how the inherited mutations interfere with kidney development.

Their findings, due to be released soon, may eventually lead to development of better treatments for cystic kidney diseases.

Zebra fish

RESEARCH ROUND UP // P13

New itch study could significantly improve quality of life for dialysis patients

Seeking ways to detect a killer condition early

We are funding a 19-month research project that aims to improve the reporting of severe itching – a little talked about side effect of kidney disease that can trigger other problems such as disturbed sleep and depression.

A protein called NGAL will be at the centre of a one-year study which could pave the way for the earlier detection of acute kidney injury (AKI) – a condition that causes around 40,000 deaths every year in the UK.

Recent data from 17 countries worldwide suggests that more than one in three people on dialysis are bothered by itch, some of them severely. But, for reasons still largely unknown, many patients do not discuss their itch with their care teams, which may lead to the problem remaining undetected and untreated.

AKI causes the kidneys to suddenly stop working properly and often occurs as a result of something which gives the kidneys a ‘shock’ – for example, an operation, a systemic infection or certain drug combinations.

The severity of the condition can range from minor loss of kidney function to complete kidney failure, and it can become a life-threatening problem within hours.

Accelerometers will track episodes of scratching overnight

We have awarded a £39,506 Research Grant to Dr Sabine van der Veer from the University of Manchester and her collaborators to explore reasons for underreporting of itch. They will also develop and evaluate a method to detect levels of scratching using a movement-tracking device (known as an accelerometer) that patients will be asked to wear on their wrists at night.

Scientists now believe that the protein has specific features that enable it to look slightly different, depending on where in the body it has originated.

So we have awarded a £39,964 Research Grant to Professor John Colyer and his team at the University of Leeds to see if they can detect these features and hopefully pinpoint the particular ‘chemical signature’ of kidney origin NGAL.

Patients will be involved in every aspect of the project, to ensure that it is relevant to their needs and experiences.

By delivering a method that supports patients and care teams to discuss itch, Sabine and her team hope to improve itch management, as well as patients’ wellbeing.

Existing blood and urine tests tend to detect the problem once kidney damage has occurred.

The NGAL protein could potentially be a very good early indicator of AKI but increased levels can be seen accompanying breast cancer or inflammation, as such it is a poor diagnostic marker for AKI.

Graphs showing different movements detected by an accelerometer; with scratching in the middle

The team hope that this preliminary study could eventually lead to the development of new tests for AKI that will enable doctors to identify patients at risk earlier and so treat them sooner.

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OUR HEROES // P14

Paul’s passion for kidney research It was a poignant moment when Paul Matthews crossed the finishing line with family and friends at this year’s London Bridges Walk – 26 years after he and his brother Stephen completed the first ever one.

He remembered Stephen, who sadly passed away in 1994, and their lives together growing up with Alport Syndrome. He also thought of his daughter Emma, who carries the gene for the condition, and how medical advancements are offering her hope for the future.

Paul’s whole family have been affected by Alport Syndrome – the second highest cause of inherited chronic kidney disease after polycystic kidney disease. But they have refused to let it define them.

“I received my third kidney transplant in 2014 after being on dialysis for 11 years.

Stephen had four transplants, our cousin had two, and my mum and aunt have also had one transplant each,” says Paul.

“My daughter also carries the gene meaning there’s a 50% chance she’ll pass it on to her children. However she’s now taking a drug which will hopefully delay the onset of kidney failure in later life. Now that the chromosome responsible for the condition has been identified, people can choose to have IVF treatment to eradicate Alport’s from future families.

Paul with older brother Stephen at London Bridges Walk 1990

“Treatments have advanced so much over the years. The transplant drugs are totally different to the ones I was on when I had my first transplant in 1980 and dialysis today bears little resemblance to the dialysis my brother and I had back in the 70s.

“In fact, that’s how we first got involved with fundraising. Stephen wanted to dialyse at home to make his life a little bit easier but the hospital couldn’t afford to give him a machine, so mum and all her friends got together and started raising money to buy one. This led to more fundraising activities and then we started raising awareness about the need for kidney donors. At some point mum told us about Kidney Research UK’s first ever London Bridges walk in 1990 and we said – ok we’ll do it.”

Over the years Paul, his family and friends have been involved in many events, including four London Bridges Walks, and have raised thousands of pounds for Kidney Research UK and other charities. They’re now focusing their efforts on raising as much money as possible to help Derek smash his £2,500 London Marathon fundraising target.

“I decided to put my all into this year’s London Bridges Walk and raise as much awareness as possible,” says Paul.

But it’s my family and friends who do all the hard fundraising work.

They’re the real heroes.

“It was very emotional and very physically challenging towards the end because I suffer from really painful heels,” says the father of two from Ware, Hertfordshire.

“So when I got over that finish line I shed a few tears for a variety of reasons.

“I decided to do the walk again this year to raise awareness of Alport Syndrome. It was also a great opportunity to raise money for Kidney Research UK so they can continue to fund research into kidney diseases such as Alport’s.

“There were ten of us in all, including my daughter, my nephew, my best friend Derek Fuller and a number of my colleagues from Tesco head office. We managed to raise over £3,000 for the charity and Derek was so impressed and moved by the event that he has now signed up to run next year’s London Marathon for them.”

Find out more: www.kidneyresearchuk.org

Paul Matthews and his daughter Emma

Paul and Arran Matthews with Sandra Currie at London Bridges Walk 2016

TO SUPPORT PAUL’S BEST FRIEND DEREK VISIT HIS JUSTGIVING PAGE: WWW.JUSTGIVING.COM/FUNDRAISING/DEREKSFULLER?UTM_ID=27

YOUR YOURMESSAGES MESSAGES// //P15 P15

Stay in touch We’re always keen to hear from our supporters and it’s never been easier to get in touch. You can follow us on Twitter, where we’re @Kidney_Research, and we’re also on Facebook, Instagram and LinkedIn. If you’d like to send us a letter, the address is: Update Magazine, Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ or email: pressoffice@kidneyresearchuk.org.

Star Tweets

STAR !

ER LETT

@Kidney_Research Ward 7 Children’s Haemo Unit with their medals yesterday, that’s our future right there and research helps them everyday @KerenBurdett

@Kidney_Research Lovely surprise to get personal thank you from you guys for doing #thamespathchallenge Pleasure was all mine #organdonation @Kelstickland

Three weeks post kidney transplant and looking well #OrganDonation #NeverGiveUp @NHSOrganDonor @Kidney_Research @1MLikes4Matthew

Star Facebook posts Kidney Research UK told us that messages of support for Daniel had been sent into them from all over the UK. Today these arrived!

Look what arrived today @VirtualRunnerUK @Kidney_Research. Pleased to have supported such a worthy cause. #ukrunchat @See_Paul_Run

Totally overwhelmed by how many there are. Just wonderful xxx.

Louise Paton, via Facebook

Call our donation line: 0800 783 2973

We are committed to finding cures for kidney disease, if you can share that commitment by making a regular gift, you will help us fund even more vital research.

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could help patients like Deborah who waited for three years before a kidney became available

could fund more researchers like Mike Nicholson who has pioneered a new procedure making more kidneys available for transplant

could help more children like Daniel who depend on our research to enable them to have a transplant in the future

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Appeal number: 2016-UPDNOV