The National Unified Renal Translational Research Enterprise for biosampling patients with rare kidney disease
NURTuRE–Rare Kidney Disease is a study gathering samples and health information from children aged 0-16 across the UK. It focuses on those with rare kidney diseases, especially a group called glomerulonephritis, and also includes healthy children. By looking at blood and urine samples and medical records over time, researchers aim to understand why these conditions happen, spot early signs of illness getting worse, and help create better, more personalised treatments in the future. There are no extra tests just for the study; samples are taken during routine care. The goal is to improve understanding and care for children with these rare kidney conditions.
At a glance
What is this study about?
Rare kidney diseases are uncommon conditions that can make it harder for the kidneys to do their job properly. Because each type of rare kidney disease only affects a small number of people, it's really tough for doctors and scientists to gather enough information to properly understand them. This is where this important study, called NURTuRE–Rare Kidney Disease, comes in.
The main aim of this study is to collect samples and health information from children across the UK who have rare kidney diseases. By gathering blood and urine samples, alongside their medical records, the researchers hope to piece together a clearer picture. They want to find out what causes these conditions, identify early signs if someone's illness is getting worse, and ultimately help develop new and better treatments. The study focuses particularly on a group of conditions called glomerulonephritis, which includes different types like IgA Nephropathy and Lupus Nephritis.
The information collected in this study could be incredibly valuable. It will help researchers learn more about how these diseases behave over time and why they affect some children differently from others. This deeper understanding is crucial for creating more personalised treatments that are tailored to each child, making future care potentially much more effective.
Key takeaways
- Aims to understand and improve treatments for rare kidney diseases in children.
- Collects blood and urine samples, and health information from children aged 0-16.
- Includes children with rare kidney diseases (glomerulonephritis) and healthy children.
- No extra tests are performed solely for the study; samples are taken during routine care.
- Participation involves either one visit (healthy children) or four visits over 12 months (children with kidney disease).
- Results will help future research and the development of personalised treatments.
Who may be eligible?
This study is looking for two main groups of children and young people aged 0 to 16 years old. The first group includes children diagnosed with certain rare kidney diseases called glomerulonephritis, such as IgA Nephropathy, Lupus Nephritis, or Idiopathic Nephrotic Syndrome. These children will already be having medical tests like blood tests or kidney biopsies as part of their usual hospital care.
The second group is healthy children aged 0 to 16. These children would be visiting the hospital for minor procedures or routine checks for other reasons. They should not have any kidney problems or conditions that cause inflammation.
Children cannot join the study if they have other serious short-term or long-term illnesses that might affect the study results, like infections or certain medical conditions. For healthy children, they also can't take part if their urine test shows anything unusual or if they have kidney problems.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Is my child aged between 0 and 16 years?
- Does my child have a rare kidney disease like IgA Nephropathy, Lupus Nephritis, or Idiopathic Nephrotic Syndrome (if part of the rare kidney disease group)?
- Is my child already having blood tests or kidney biopsies for their usual medical care (if part of the rare kidney disease group)?
- Is my child healthy and attending hospital for a minor procedure or routine check, without kidney or inflammatory conditions (if part of the healthy group)?
- Does my child not have any other serious acute or chronic illness that might affect the study?
- Am I (as a parent/guardian) willing to give informed consent for my child to participate?
What does participation involve?
If a healthy child and their parent or guardian agree to take part, they will join the study just once. They will provide a urine sample, and if they are already having a blood test for another medical reason, a small blood sample will also be collected for the study. No extra needles will be used for research purposes if not already required.
For children with glomerulonephritis, participation involves four study visits over a 12-month period. At each visit, blood and urine samples will be taken, and important health information about their kidney condition will be recorded. If a kidney biopsy is being done as part of their regular medical care, a tiny amount of any leftover tissue may also be used for the study. These participants will also be asked to join the National Registry of Rare Kidney Diseases, which helps link their long-term health information with the samples collected in the study.
Potential risks and benefits
Locations (13)
- University Hospitals Bristol and Weston NHS Foundation Trust - Oxford Covid19 TrialsCity onlyBristol, England
- Alder Hey Children's TrustCity onlyLiverpool, England
- Great Ormond Street Hospital for ChildrenApproximateLondon, England
- Nottingham Children’s Hospital – located in Queen’s Medical CentreCity onlyNottingham, England
- Birmingham Women's and Children's HospitalCity onlyBirmingham, England
- The Royal Belfast Hospital for Sick ChildrenCity onlyBelfast, Northern Ireland
- Royal Hospital for Sick Children (Glasgow)ApproximateGlasgow, Scotland
- Evelina London Children's HospitalApproximateLondon, England
- Southampton Children’s Hospital - located in Southampton General HospitalCity onlySouthampton, England
- Leeds Children’s Hospital – located in Leeds General InfirmaryCity onlyLeeds, England
- Noahs Ark Childrens Hospital for WalesUnverifiedCardiff, Wales
- Great North Children’s HospitalUnverifiedNewcastle upon Tyne, England
Common questions
What is glomerulonephritis?
Glomerulonephritis is a group of rare kidney conditions where the tiny filters in the kidneys (called glomeruli) become inflamed. This can stop the kidneys from working properly.
Will my child have extra tests if they join the study?
No, your child will not have any extra blood tests or kidney procedures solely for this study. Samples will only be taken if your child is already having these tests as part of their usual medical care.
How long will the study go on for?
Children who are healthy will take part just once. Children with rare kidney disease will have four visits over 12 months. The study itself is expected to run until August 2029.
Who is paying for this research?
The study is being funded by LifeArc, which is a non-profit organisation based in the UK that supports medical research.
Where is the study taking place?
The study is happening in 13 hospitals across England, Scotland, Wales, and Northern Ireland. It's coordinated by the University of Bristol and led by the University of Liverpool.
How to find out more
Serena McGuinness
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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