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In addition to supporting research the NIKRF also provides funding for equipment unavailable from the National Health Service.

Research into Chronic kidney disease

Chronic kidney disease (CKD) is a common condition. There is evidence demonstrating that at least 5% of the population have reduced kidney function (<60% of normal) and for persons with CKD this is associated with an increased risk of heart disease and early death. Diabetes and hypertension (high blood pressure) are significant risk factors for developing kidney disease but there are other important causes of kidney failure including glomerulonephritis (inflammation of the filtering units in the kidney) and polycystic kidney disease (an inherited disorder of kidney structure).

The NIKRF supports a wide variety of research projects that explore why persons develop kidney failure and assess the best forms of treatment for these kidney conditions. Research has played a vital role in developing the best evidence for current care of patients with kidney disease. For example, innovations in artificial kidney treatments (dialysis) and organ transplantation have improved the quality of life and extended the quantity of life for thousands of patients locally. The NIKRF has directly contributed to these improvements in patient care by supporting local research which has a national and international impact.

By providing Fellowships and Studentships, it has supported over 50 NHS doctors and scientists in training. More than 40 postgraduate degrees (MPhil, PhD or MD) have been awarded to the recipients of NIKRF grants. Twenty five of the clinical research fellows have already progressed to successful careers as consultant physicians and a similar number of scientists have established careers in clinical laboratory posts. At least 200 peer-reviewed papers have been written acknowledging NIKRF funding and many more papers have been presented at scientific meetings.


                         Clinical and Research Activity Reports (2018-2019)

Presented by Professor Peter Maxwell at the 2019 Annual General Meeting of the Northern Ireland Kidney Research Fund 

On behalf of the Medical Advisors to the Northern Ireland Kidney Research Fund, it is a pleasure to present this annual report highlighting renal medicine activity in Northern Ireland and selected kidney research projects. 

Clinical Renal Services in Northern Ireland

Kidney Transplantation: 2018-19 was another excellent year for the transplant programme in Northern Ireland with 110 patients receiving a transplant (compared to 137 in 2017-18, 124 in 2016-17). Nearly all of these operations were performed by the team at Belfast City Hospital. Over the last 5 years, there has been an average of 119 transplants per year. The sustained increase in the transplant rate is underpinned by the success of the living donor kidney transplant programme. Northern Ireland’s transplant service is seen as a model of best practice and recognised by the 2019 award for excellence by the British Transplantation Society. Northern Ireland has the highest rate (per million population) of living donation in the UK (and Europe). This success is founded on expertly managed clinical pathways (see publication by renal registrar, Dr Judi Graham, and Dr Aisling Courtney in American Journal of Kidney Diseases Am J Kidney Dis. 2018 Feb;71(2):209-215) and the outstanding generosity of friends and families who are willing to donate kidneys. In the 2018-19 year, 62 transplants were from living kidney donors and 50 from deceased donors. 
In this year, 2019, there have been 49 kidney transplants performed by mid-June. Of interest, an 82 yr. old patient had a kidney transplant in May 2019 after waiting almost 4 years. This person is our oldest transplant recipient to date. In recent years, the much higher rate of kidney transplantation has helped to reduce the waiting time for transplantation for many patients and reduce the total number of persons needing chronic dialysis treatments. There are just under a hundred persons in Northern Ireland on the active kidney transplant waiting list today (compared to almost 300 in 2008).  This transplant team is multidisciplinary and consists of nurses, surgeons, anaesthetists, nephrologists, radiologists, junior doctors, administrative and clinic staff working with hospital managers and laboratory colleagues. The work of scientific staff in the Histocompatibility and Immunogenetics (H&I) Laboratory is particularly relevant for the safety and success of transplantation. In September 2018, we were delighted to welcome back Dr Jennifer McCaughan as a consultant transplant physician and the clinical director for the H&I laboratory in the Belfast HSC Trust.

Number of dialysis patients in Northern Ireland: Over the last 60 years, the provision of chronic dialysis has steadily increased with more than 1 million persons receiving dialysis worldwide. Chronic kidney disease affects all age groups but is more common in older persons particularly if they have a personal history of diabetes and hypertension. It is predicted that by 2040, chronic kidney disease will be one of the top five causes of death worldwide. Chronic kidney disease has really emerged as a global public health problem. Chronic dialysis is a very expensive treatment so it may be rationed or indeed unavailable in many lower income countries. 
In Northern Ireland, expansion of chronic dialysis capacity was carefully planned over the past 25 years leading to development of individual renal units in Tyrone County Hospital, Antrim Hospital, Daisy Hill Hospital, Ulster Hospital and Altnagelvin Hospital as well as further expansion at Belfast City Hospital and Royal Belfast Hospital for Sick Children. Over the last eight years, the numbers of patients receiving chronic dialysis in Northern Ireland initially stabilised and then has actually decreased. This is very good news for patients and families as it reflects the excellent work of the transplant programme. A “pre-emptive” kidney transplant is the best option for a person with progressive chronic kidney disease and is otherwise “fit” to have a transplant. A pre-emptive transplant avoids the costs and potential complications of starting dialysis and needing this treatment for months or years. In 2018-19, an impressive 65% of all the patients who received a kidney transplant had a pre-emptive transplant. This is a far higher percentage than any other part of the UK. 
In June 2019, there are 688 persons in Northern Ireland receiving chronic dialysis treatment. Presently, 606 patients need haemodialysis (requiring almost 100,000 individual sessions of hospital dialysis in Northern Ireland renal units). Some 105 individuals have independent home or self-care haemodialysis and a further 82 persons perform home-based peritoneal dialysis. Overall, approximately 15% of persons with end-stage renal disease undertake some form of home-based dialysis treatment. Unfortunately some individuals needing hospital-based dialysis treatments will still have long journey times to renal units for three times weekly treatment. Travel time for dialysis is still an issue for the future but no new hospital-based dialysis units are planned in Northern Ireland, as there is sufficient total dialysis capacity.

In comparison to many other parts of the UK, relatively few patients (less than 15%) present as an emergency with end-stage kidney failure. In some parts of the UK, these unplanned and emergency starts on dialysis can be as high as 50%. We think that the much lower rate of unplanned dialysis in Northern Ireland reflects better awareness of chronic kidney disease (education and training of students and health care professionals) and the very good links nephrologists have with General Practitioners who refer patients with chronic kidney disease in a timely manner. 

Share HD: This is a national initiative to empower persons on haemodialysis to take a more active part in their treatment. This may involve measuring their own weight, recording blood pressure, setting up the dialysis machine and placing needles in their fistula for dialysis. This scheme has been embraced throughout Northern Ireland and is promoted by specialist dialysis nurses and consultants Dr Jennifer Hanko and Dr Agnes Masengu. 

Chronic kidney disease: Worldwide, approximately 5% of the adult population have kidney function that is less than 50% of normal. Chronic kidney disease (CKD) is a common and increasing health problem (again reflecting an ageing population with multiple other health problems especially diabetes). Early detection of CKD is possible using commonly performed blood and urine tests. Improved use of electronic health records, including assessing kidney function data, together with education of the public and health care professionals has helped to increase awareness of chronic kidney disease. The NIKRF continues to support a whole range of research projects focused on CKD. 

Acute Kidney Injury: Acute kidney injury (AKI) is common, costly and associated with prolonged stays in hospital. Persons with the most severe forms of AKI have a high mortality (especially when AKI is severe enough to need dialysis or the patient is so ill that they need ICU support). Up to 25% of hospitalised patients develop some degree of AKI and it is therefore important that this is recognised and changes to practice are made to reduce the impact of AKI. We developed guidelines for AKI and CKD that are hosted on the Regulation and Quality Improvement Agency (RQIA) website  Nephrologists teach every junior doctor in Northern Ireland, during their 2nd year of training, and all medical students about AKI and CKD. Their knowledge about kidney disease is tested in exams. An electronic alert for AKI now operates on all computerised laboratory results. This triggers clinical teams to take important steps to reduce the harm from AKI. These initiatives also build on local research into AKI that was supported by the NIKRF.

 The Regulation and Quality Improvement Authority (RQIA) formally inspected the renal services in Northern Ireland in 2016. The assessors visited every renal unit and sought extensive written and verbal evidence of the quality of services provided. We have been informed that a final RQIA report, based on the 2016 inspection of on renal services, will not be published. We were disappointed about this outcome given the amount of work undertaken by all of the renal units. The RQIA are in discussions with nephrology staff to explore whether to have a new inspection in 2019. We remain open to review of our activity through published reports by the United Kingdom Renal Registry, NHS Blood and Transplant authority and indeed public meetings such as the AGMs of the NIKRF and Northern Ireland Kidney Patients’ Association. We always seek to improve the quality and range of services provided to patients. 

In summary, in Northern Ireland the healthcare for kidney disease remains robust, well organised and can demonstrate excellent results against national benchmarks. We do have clinical pressures resulting from gaps in doctor rotas and challenges related to provision of care from allied health professionals. The clinical teams in each of the Renal Units in Northern Ireland work as an integrated network of staff to provide high quality care to persons with Acute Kidney Injury, Chronic Kidney Disease and those individuals with End-Stage Renal Disease requiring dialysis. In the coming year 2019-20, we would hope to further strengthen the surgical programme with the introduction of a training programme for future transplant surgeons, offer nephrology training posts to doctors from low income countries (Medical Training Initiative), develop the vascular access pathways for dialysis patients and also recruit new staff to support kidney transplantation. 

Research activity supported by NIKRF

Research is vitally important to the continued success of our renal services. Research can try to find answers to difficult questions and help inform everyone about the best evidence for clinical practice. For almost 50 years, the NIKRF has supported many excellent research projects and much of this work eventually translates into improved care of individuals with kidney disease and much better use of limited healthcare resources. 
The NIKRF is supporting a broad range of excellent renal research projects. These include: 

Diabetic kidney disease (the major global cause of end-stage kidney failure) 

Factors influencing the long-term success of renal transplantation including the risks of cardiovascular disease and new-onset diabetes after transplant  

Increased risk for heart disease in persons with chronic kidney disease

Safer ways of prescribing intravenous fluids

Reasons for rapid weight loss in dialysis patients 

I would like to highlight work undertaken by some of the individual staff you have supported over the past year. 
In 2018 and 2019, the NIKRF directly supported numerous researchers.
We are delighted to welcome Dr Jennifer McCaughan who is now the first consultant nephrologist in the UK to be jointly appointed as a transplant physician and Clinical Lead for Histocompatibility and Immunogenetics (or H&I for shorthand). Jennifer took up her post based at the Belfast HSC Trust in September 2018 and has already set in motion many changes to help boost training in the H&I lab and expand the range of services provided to the transplant programme. We sincerely thank Jennifer for undertaking such a long and winding road of combined clinical and scientific training to develop these unique skills. We are also indebted to the NIKRF for the steadfast support provided to Jennifer over the past 4 years. Leadership of transplant science for the Northern Ireland kidney transplant programme is in very capable hands. 

2. Dr Laura Smyth completed her PhD in genetic and epigenetic features of chronic kidney disease in 2016. Since then Laura has been generously supported as a NIKRF postdoctoral research fellow and we are extremely grateful for the renewal of her NIKRF postdoctoral fellowship in 2018. Laura had two papers accepted for oral presentation at the American Society of Nephrology meeting in San Diego in October 2018. 

3. Dr Richard McCrory completed his 3 years as a PhD student co-funded by NIKRF in July 2018. Richard is enrolled in QUB to write up his PhD thesis whilst simultaneously working as the Chief Medical Registrar in Antrim Hospital. We wish Richard well with his thesis writing. 

4. Dr Paul Devine (2017-19) is a clinical nephrology trainee who is completing a research project that assessed novel and traditional risk factors for cardiovascular disease. Paul has studied the long-term risk of heart disease in kidney transplant recipients and used stored blood samples (obtained following appropriate consent). Of interest, he followed up a group of almost 400 Northern Ireland kidney transplant recipients who volunteered for previous NIKRF-sponsored research projects. The blood samples were provided by kidney transplant patients in the late 1990s and early 2000s and were previously extensively studied by NIKRF fellows Dr Ronan Cunningham (PhD) and Dr Grainne Connolly (MD). Paul is in the final stages of writing up his MD thesis. 

5. Jinnan Zang, a 3rd year PhD student, had her paper accepted for poster presentation at the ASN meeting in San Diego last month. Jinnan has discovered novel biomarkers in urine samples that seem to predict the risk of diabetic kidney disease. Jinnan has received NIKRF funding for laboratory consumables. She hopes to submit her PhD thesis in September 2019 

6. Mr Chris Wooster is a laboratory technician within the Nephrology Research Laboratory at the Belfast City Hospital. NIKRF have generously part-funded Chris (Feb 2018-Feb 2020) with the remaining costs borne by Queens University. Chris has proved to be an invaluable and hardworking colleague in the lab. He helps keep all of the laboratory projects running smoothly. 

7. Staff Nurse Michael Matthews, based at Antrim Hospital Renal Unit, has been awarded an NIKRF PhD fellowship that begins in September 2019. Michael plans to develop a psychosocial intervention to support informal caregivers of people with end-stage kidney disease receiving haemodialysis. Dr Helen Noble and Professor Joanne Reid, School of Nursing, Queens University Belfast will act as supervisors. 

8. Professor Joanne Reid, Dr Claire McKeaveney and Dr Helen Noble, School of Nursing QUB, have received research funding to support their work on renal cachexia in dialysis patients. 

The nephrology research staff at Queens University includes Dr Amy Jayne McKnight, Dr Gareth McKay and Professor Peter Maxwell. An excellent research laboratory manager, Ms Jill Kilner, and research technician, Mr Christopher Wooster, ably support us. There were 11 postgraduate students in the nephrology research group during 2018-19. Students and staff have presented papers at the annual meetings of Renal Association, European Renal Association, American Diabetes Association, Vascular Access Society of Britain and Ireland, British Transplantation Society Irish Nephrology Society and Irish Society for Human Genetics. 

Future research plans:

We have a vibrant research group with strong links with the clinical teams. In the year ahead, we should have 11 postgraduate students and 3 post-doctoral research fellows in the Nephrology Research Group and Rare Disease Partnership at Queen’s University and Belfast HSC Trust.

In 2018 and 2019 (to date), more than 30 kidney research papers have been published in peer-reviewed scientific journals by staff supported by NIKRF. These can be found by searching PubMed ( using names of the research staff you support. Papers have been published in journals such as New England Journal of Medicine, Diabetes, Journal of American Society of Nephrology, American Journal of Transplantation and PloS One.
NIKRF funding is the bedrock for high quality research that leads to clinical innovation in Northern Ireland. The investment in people who receive research training is the most valuable legacy of this support. Many of the people you have generously supported are now leading clinicians and scientists both in Northern Ireland and further afield. 
Dr James Douglas, your patron and first beneficiary of a Northern Ireland Kidney Research Fellowship, triggered interest in writing a book about the first 50 years of transplantation in Northern Ireland. This book, “The Belfast Recipe” 50 years of Renal Service in Northern Ireland was published in 2018 and nearly sold out on its first release at the Titanic Building Gala Dinner. NIKRF have supported more than 40 individual research fellowships within the same period.

On behalf of the Medical Advisors, research staff and clinical teams, we wish to thank everyone within the NIKRF, for your time, energy, humour and enthusiasm supporting both renal services and kidney research in Northern Ireland. 

Professor Peter Maxwell MD PhD FRCP 
on behalf of the Medical Advisers to the NIKRF 

Dr Aisling Courtney MPhil FRCP, Belfast HSC Trust; 
Dr Agnes Masengu MD MRCP, Southern HSC Trust; 
Dr Neal Morgan PhD FRCP, Southern HSC Trust; 
Dr Robert Mullan MD FRCP, Northern HSC Trust; 
Mr James McDaid PhD FRCS; Belfast HSC Trust; 
Dr Alastair Woodman MD FRCP, South Eastern HSC Trust 

26 June 2019