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 nearly reached the 3,000 target for CKD patients but are still looking for people with nephrotic syndrome at our participating renal units. As of Feb 2019, we recruited our 400th patient so we are half-way towards our target of 800 patients with nephrotic syndrome. If you haven’t yet been approached, and you are interested in participating, please ask the doctor or nurse at your renal unit.
For those already in the study, we do still need your help.
It is important that where possible, we collect follow-up samples from all CKD patients, 12-18 months after your first study visit. If you can please return for a follow-up visit when asked, which would normally be during one of your routine hospital appointments, we would be very grateful indeed.
For those with NS, it is important that we also collect samples during relapse episodes. These samples will be help us determine 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.
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.
The NURTuRE-CKD cohort 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.
The NURTuRE-INS (NephroS) cohort 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.
Some patient stories of three people already taking part:
‘Life is not just for yourself’, says kidney patient David Southworth who is taking part in NURTuRE, his second research study at Salford Royal Hospital. It’s a simple sum for the former further education teacher – being involved in research has meant little inconvenience for him and it is helping to find new and better treatments that will one day transform patients’ lives.
Read more here
“When I was asked about taking part in research myself, I couldn’t see any reason why not. I’ve had a few extra tubes of blood taken and answered questionnaires. It has only taken a few minutes and it could make such a difference in the future – if not a cure, then something that will prolong people’s lives. It’s really easy and it’s helping other people with kidney problems as well as myself. You never know when there might be a breakthrough.”
Read more of Laura’s story here
Thank you to David and Laura and Salford Royal NHS Foundation Trust for allowing us to share these stories
Derbyshire mum, Skevy Piponides (pictured here with her daughters Florentia and Andrea), has late-stage CKD and hopes her involvement in the NURTuRE study could eventually shed light on the causes of kidney disease.
“I had no prior symptoms or problems but, after a bout of mild dizzy spells, tests revealed that I had the kidney of an average 80-yearold, in terms of condition and function. No one can explain how this has happened, but the biobank may help to finally get to the bottom of this mystery and shed further light on the causes of other kidney conditions.”
Skevy’s renal unit at the Royal Derby Hospital invited her to take part.
“I was more than happy to help and the whole process has been so simple. They just took blood and urine samples, did some height and weight measurements, tested my memory skills and asked me a few other questions. It was all done during a routine appointment and they’ll simply repeat the process in a year’s time. I’ve never been part of a research study before but, if my involvement can help other people like me, then that would be fantastic.”
Skevy’s story also featured in an article about NURTuRE in Kidney Research UK’s Update magazine in November 2017