The NURTuRE biobank has the potential to unlock answers to some of the biggest questions about chronic kidney disease (CKD) and idiopathic nephrotic syndrome (INS).
We have now reached the 3,000 target for CKD patients but are still looking for people with nephrotic syndrome at our participating renal units. We are over half-way towards our target of 800 patients. If you haven’t yet been approached, and you are interested in getting involved, please ask the doctor or nurse at your renal unit.
For those already in the study, we do still need your help.
We need to collect follow-up samples from all CKD patients, 12-18 months after your first study visit. We would be very grateful if you can please return for a follow-up visit when asked, which would normally be during one of your routine hospital appointments. For those with NS, we also need to collect samples during relapse episodes. These will be help us discover differences in your blood and urine during a relapse compared with periods of remission and therefore give us clues to what might be causing your NS. Please click here for more information.
So what happens to your samples?
You have seen your nurse, answered loads of questions, agreed to share your medical information, had your blood taken and given a sample of your urine. Have you wondered what happens next – how your samples and information help us to find ways to understand or treat kidney disease? Check out our little video and get a snapshot of what goes on and where.
Patients are helping us throughout the study
Patient groups (in particular, the Nephrotic Syndrome Trust and Kidney Research UK’s Lay Advisory Committee) have been involved at all stages in the development of NURTuRE. Patients have also had direct input into the study documentation, including the patient information sheets and consent forms and regularly provide help and advice to the study’s steering committee.
Are you interested in getting more involved in research?
Check out Kidney Voices for Research hosted by Kidney Research UK. If you want to use your experience and insight to help other patients, join our growing online community of patient research advisors by clicking below.
NURTuRE-CKD involves 3,000 people from kidney clinics in England, Scotland and Wales. Researchers will look at disease progression in people with CKD. In some people, kidney function deteriorates more quickly than in others and researchers aim to investigate risk factors that may help us to predict which people with CKD will go on to develop serious kidney problems or disorders of the heart and arteries. This will allow us to reassure those people who are at low risk, sparing them from unnecessary treatment and to provide appropriate monitoring and treatment for those at higher risk.
NURTuRE-INS (NephroS) involves over 800 adults and children with INS. Researchers will look at how the disease actually affects the kidney and whether this is the same in every patient, as well as looking at genetic factors. The aim is to increase medical knowledge about this disease and help provide better treatment for NS in the future.