New resource aims to support more precise approaches to diagnosing and treating idiopathic nephrotic syndrome

16 September 2024

A new paper published in Clinical Kidney Journal by Professor Moin Saleem from the University of Bristol highlights the potential of NURTuRE – a unique resource designed to accelerate research through secure provision of biological samples and linked healthcare data – to offer new insights and approaches to the management of idiopathic nephrotic syndrome (INS).

Building a greater understanding of a challenging disorder

Idiopathic nephrotic syndrome (INS) is a term used to describe a group of symptoms that occur when the delicate filters in the kidney are damaged. Signs of INS can include swelling (oedema), frothy urine and weight gain due to retained water. Patient experiences of INS, and the underlying disease causes, vary and doctors often group individuals with this diagnosis based on how well they respond to steroids – the main treatment approach.

Main wearing black jumper and blue jacket

Professor Moin Saleem

In order to improve patient outcomes, and offer more effective treatments, a better understanding of the causes of INS are needed and the information in NURTuRE will provide an important resource to enable this.

Moin commented: “We know that many patients with INS will not benefit from treatment with steroids, but other options are currently not available. By studying large groups of patients with INS and looking closely at how their condition progresses using NURTuRE we should be able to identify different types and causes of INS, leading to more effective approaches to diagnosis and treatment.”

Introducing NURTuRE

NURTuRE is a collaboration between Kidney Research UK, research groups and pharmaceuticals companies. Containing information from patients living with different types of kidney disease in the UK, it offers a unique resource to support important new research. To date, patients diagnosed with chronic kidney disease (CKD) and idiopathic nephrotic syndrome (INS) have joined the NURTuRE study, with acute kidney injury (AKI) scheduled to begin soon.

The NURTuRE team collected and securely stored biological samples from approximately 3,000 patients with CKD and nearly 800 patients with idiopathic nephrotic syndrome (INS) who have generously agreed to share their information for the purposes of research. This type of collection of samples for research is known as a ‘biobank’.

In addition to samples of plasma, serum, urine, DNA and tissue, NURTuRE will securely link to long-term clinical (healthcare) data, through the UK Renal Registry and NHS Digital. Details that could identify an individual, such as name of birth date, are removed from the data prior to secure sharing with approved scientists and doctors. The information in NURTuRE will support crucial new research, offering hope to many patients living with kidney diseases.

A detailed resource designed to support carefully selected studies

Initial investigations of the information in NURTuRE showed that 739 participants joined, half of whom were diagnosed during childhood. When they were recruited, 58 patients (8%) had received a kidney transplant, 19 patients (3%) were receiving dialysis and 268 patients (36%) were or had been treated with steroids. Moin added; “NURTuRE offers a unique insight into INS by securely combining medical, biological and quality of life information. We hope that future research using this resource will allow a more personalised, precise approach to diagnosing and treating patients living with INS, and the NURTuRE team would like to thank all those patients who generously donated their information to make this possible”.

Information from individuals living with INS who enrolled in NURTuRE was collected by research nurses using healthcare records, interviews and questionnaires. This included quality of life information, past medical history, family history and medication information, alongside height, weight, and blood pressure. Blood and urine samples were also collected for all participants, alongside samples from biopsies when available. Everyone who joined NURTuRE with a diagnosis of INS had further information collected if treatment was required and also at 6 months for a third of the group.

Elaine Davies, Director of research operations at Kidney Research UK commented: “NURTuRE is an important step forward for everyone in the kidney research community as it offers the potential to offer insights into kidney diseases that would not have previously been possible. It has been a huge team effort, involving many research partners and patients and we look forward to sharing news of the insights gained from this vital resource.”