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Around three million people in the UK have kidney disease

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Paediatric Nephrology Clinical Study Group

Paediatric Nephrology Clinical Study Group

Children can experience many forms of kidney disease from before birth to when they transition into adulthood, and are affected by acute kidney injury, anaemia, cardiovascular consequences of kidney insufficiency, glomerular and tubular abnormalities.

There are currently nearly 1,000 children in the UK who are receiving kidney dialysis or have had a kidney transplant. Children are much more likely to experience the consequences of inherited genetic kidney conditions which although rare (less than 1 in 2,000 population), can be highly debilitating.

In addition to the specific renal diseases children experience they are developing emotionally, physically and academically during this period and require these needs also be taken into consideration. Research is crucial to improve the outlook and quality of care for children with renal conditions.

Who we are

The Paediatric Nephrology Clinical Study Group is led by Dr Sally Johnson, Consultant Paediatric Nephrologist, Great North Children’s Hospital and National Renal Complement Therapeutics Centre, Newcastle.

Sally Johnson

Sally Johnson

Group meetings

Our last formal meeting was held in January 2019 as part of the BAPN annual meeting where we considered the future remit of the group in the absence of support from the Medicine for Children Research Network (MCRN). In addition to CSG leads, the following colleagues have agreed to act as research leads for their Centres:

  • Rachel Lennon – Manchester
  • JJ Kim – Nottingham
  • Manish Sinha – Evelina
  • Shivaram Hegde – Cardiff
  • Sally Johnson – Newcastle
  • Larissa Kerecuk – Birmingham
  • Ben Reynolds – Glasgow
  • Detlef Bockenhauer – GOSH
  • Hitesh Prajapati and Veronica Swallow – Leeds
  • Richard Coward – Bristol
  • Louise Oni – Liverpool
  • Rodney Gilbert – Southampton
  • Mairead Convery – Belfast

We also have specific membership for sub-groups focusing on cystic disease, glomerular disease, transplantation, acute kidney injury, CKD and dialysis.

Our aims:

To improve the renal care and treatments of children with kidney problems.

Our challenges:

  • Funding
  • Study size (as the majority of conditions are rare diseases) and therefore the need for multi-centre (even international) studies
  • Support for setting up studies – local infrastructure often saturated with clinical studies.

Key studies:

PREDNOS - This study compared two prednisolone regimes in 237 newly-presenting children with nephrotic syndrome.  Led by Professor Nick Webb and funded by NIHR HTA following a pilot funded by Kids Kidney Research and Kidney Research UK, it is now completed and accepted for publication in the BMJ. The study showed no clinical benefit of extending the initial prednisolone regimen from 8 to 16 weeks.

PREDNOS 2 - This study compares 6 days of prednisolone 15mg/m2 vs placebo at time of upper respiratory tract infection to reduce incidence of disease relapse. Led by Professor Nick Webb and Dr Martin Christian and funded by NIHR HTA, the study has recently completed recruitment of 365 UK subjects – making it the largest ever RCT in childhood nephrotic syndrome. Final patient visit due in January 2020.

HOT-KID - This study examines optimal blood pressure control in children with chronic kidney disease. Led by Dr Manish Sinha (Evelina Children’s Hospital) and funded by the British Heart Foundation, the study completed recruitment and follow-up (March 2019) with 124 children randomised to one of two treatment arms and 140 controls. Of the randomised children 87 per cent, 78 per cent and 55 per cent completed 1, 2 and 3 year cardiac and vascular assessments respectively. The trial results due later in 2019.

IKID - This study compares a novel infant haemodialysis/haemofiltration machine with other renal replacement therapies in infants weighing <8kg. Led by Dr Heather Lambert (Great North Children’s Hospital, Newcastle), and funded by NIHR/MRC EME programme, the study has commenced recruitment.

3H - The HDF, Heart and Height study compares different ways of dialysing children with kidney failure. Led by Dr Rukshana Shroff (Great Ormond Street Hospital, London) and funded by Kidney Research UK. It has completed recruitment.

ECUSTEC - This study examines the role of Eculizumab in Shiga-Toxin E. Coli Haemolytic Uraemic Syndrome (STEC HUS). Led by Dr Sally Johnson, Great North Children’s Hospital, Newcastle) and funded by NIHR/MRC EME programme. Recruitment is ongoing.

4C - The Cardiovascular Comorbidity in Children with Chronic Kidney Disease study is an international study led in the UK by Dr Rukshana Shroff, funded by NIHR and Kidney Research UK. It aims to answer the question: Do children and young adults with poor bone health develop cardiovascular disease? It has recruited 180 children and young adults in 4 paediatric and 5 adult UK centres (& 4 European paediatric centres). Analysis is ongoing.

Cal-Bal - Calcium Balance studies in children with CKD and on dialysis led by Dr Rukshana Shroff, Great Ormond Street Hospital.

Studies in development:

PREDNOS 3  - A randomised, double-blind, placebo-controlled trial to test the efficacy of a lower dose of prednisolone to treat relapses in children in early stage nephrotic syndrome. The study team led by Dr Martin Christian in Nottingham, will also examine biomarkers and look at mechanistic aspects to help explain range of responses.

ATTOMic - (Access to Transplantation and Transplant Outcome Measures in children) aims to clarify barriers to equity of access to kidney transplantation for children and young people and establish the true economic costs impact of dialysis and transplantation on health status and quality of life. This information will be used to improve counselling for prospective renal transplant recipients and understand why kidneys are allocated differently in the 13 children’s kidney units. Led by Dr Stephen Marks, Great Ormond Street.

PLUTO - This study aims to determine whether the incidence of abnormal and dangerous plasma electrolyte levels in paediatric renal transplant recipients will be different with the use of PlasmaLyte -148 compared to intravenous fluid with current standard composition. Led by Dr Wesley Hayes, Great Ormond Street Hospital, London.

Impact:

PREDNOS – since the trial showed no clinical benefit of an extended prednisolone course, patients will be able to take a shorter course and lower overall dose of prednisolone (steroids). This is important as it may mean reduced side effects such as mood and sleep disturbance and increased appetite.

Anticipated impact:

PREDNOS 2 – if a short course of prednisolone at time of URTI reduces relapse risk, this will reduce the total prednisolone (steroid) amount that patients receive

HOTKID – we think that tighter blood pressure control in children with CKD improve long term cardiovascular outcomes (an important cause of poor health in adults who have had CKD as children)

IKID – if effective, the NIDUS machine will improve the options for dialysis in critically ill infants

3H – we think that using haemodiafiltration instead of haemodialysis will improve the growth of children on dialysis and improve their long term cardiovascular health

ECUSTEC – if eculizumab is effective in STEC HUS, children may require less intensive treatment and have better kidney function in the long term after STEC HUS

Grants:

Programme grants -  NURTuRE (National Unified Renal Translational Research Enterprise): MRC stratified Medicine: Prof Moin Saleem PI.

Personal awards - Richard Coward MRC senior fellowship; Rukshana Shroff NIHR Clinician Scientist; Rachel Lennon Wellcome senior fellowship; Lucy Plumb Clinical PhD fellowship NIHR.

Publications:

  1. Effects of Hemodiafiltration versus Conventional Hemodialysis in Children with ESKD: The HDF, Heart and Height Study. Shroff R. et al; J Am Soc Nephrol. 2019 Mar 7.
  2. Hemodiafiltration is associated with reduced inflammation, oxidative stress and improved endothelial risk profile compared to high-flux hemodialysis in children. PLoS One 13:e0198320, 2018. Agbas A, Canpolat N, Caliskan S, Yilmaz A, Ekmekci H, Mayes M, Aitkenhead H, Schaefer F, Sever L, Shroff R
  3. Effect of haemodiafiltration vs conventional haemodialysis on growth and cardiovascular outcomes in children - the HDF, heart and height (3H) study. BMC Nephrol 19:199, 2018. Shroff R et al
  4. PREDNOS study – accepted for publication by British Medical Journal

Got a question? Get in touch.

For more information and to find out about getting involved as a patient or researcher, contact:

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