Questions and answers
NURTuRE is a resource designed to benefit everyone impacted by kidney disease and we want everyone to understand how NURTuRE works. Here you can find some commonly asked questions and details of how you can find out more.
NURTuRE is a collection of biological samples (such as urine and blood) and patient information (including blood pressure, age and gender) that is available for carefully approved research projects. NURTuRE is led and managed by Kidney Research UK working together with patient advisors, partners from universities, research groups, the NHS and pharmaceutical companies.
The patient samples and linked data held within NURTuRE have the potential to enhance our levels of understanding and accelerate new discoveries for both adults and children, transforming the ways that we prevent, predict and treat kidney disease.
A biobank is a library of biological samples that have all been collected in the same way and are stored under strict conditions that enable them to be used for research. The bank of samples is managed in such a way that it supports a wide range of potential studies that can be conducted under controlled conditions. This helps speed up research progress leading to deeper understanding of kidney disease and better treatments.
NURTuRE is a collaborative effort managed and led by Kidney Research UK. For our initial cohorts (chronic kidney disease [CKD] and idiopathic nephrotic syndrome [INS]), academic partners include the University of Birmingham, University of Bristol, University of Nottingham and Hôpitaux Universitaires Genève. Pharmaceutical company partners providing support and funding include AbbVie, AstraZeneca, Evotec, Travere Therapeutics and UCB.
1 in 10 people in the UK have CKD and this number is predicted to increase in the coming years. We need better ways to detect kidney problems, understand the disease process and treat effectively and early. NURTuRE can support this vital work in several ways through enabling carefully selected research studies.
Diseases can have complex causes, and these causes can vary from person to person. Two people may have the same disease and symptoms but for different reasons. For researchers it is important that they study samples from as many different patients as possible. NURTuRE is a central resource for researchers to securely access the information and samples they need to meet the growing challenge of kidney disease.
NURTuRE has been designed and implemented in close collaboration with the kidney patient community. Our patients provided the unique biological samples and data insights that will enable us to understand kidney disease in much more detail, and our patient partners are an important part of our decision making processes. Without patients NURTuRE would simply not be possible. We are hugely grateful to everyone involved for their help and their ongoing support.
No, NURTuRE combines a library of biological samples collected and stored under standard conditions alongside linked medical information with all details that could identify an individual removed. This approach allows approved researchers a unique and detailed way of studying kidney disease.
Most kidney diseases are complex conditions that develop due to interactions between genes, lifestyle and environment. By studying biological samples along with detailed clinical and lifestyle information from individuals living with kidney disease we will better understand the causes and progression of kidney disease. This new knowledge will support the development of new ways to detect kidney disease earlier, prevent loss of kidney function and better manage symptoms.
Access to de-identified (with all details that could identify an individual removed) healthcare data will be provided to approved researchers through a secured online store called a trusted research environment (TRE). Researchers will only be given access to specific data fields within this TRE and they will not be able to export any data. All analysis is performed within the TRE ensuring that data is secure. Biological samples will only be released to approved researchers. Full details of these processes will be available shortly.
Kidney Research UK want to accelerate kidney research, as historically progress in understanding and treating kidney diseases has been slow. Projects like NURTuRE are a demonstration of our commitment to the kidney patient community. NURTuRE is designed to improve the ways that we diagnose kidney disease and transform its treatments.
Clinical trials are set up to test drugs, devices and other interventions in patient populations. NURTuRE is a collection of samples and data collected to accelerate kidney disease research and hopefully deliver faster routes to drug development.
Under circumstances such as these, the principal investigator can contact the participant’s doctor who will then be able to discuss with the participant. Researchers do not have access to any information that could identify an individual, in order to maintain privacy.
The NURTuRE team are currently planning a third part of NURTuRE, designed to support new knowledge in acute kidney injury (AKI), with further types of kidney disease in discussion. We will share a list of hospitals who are recruiting patients when this part of NURTuRE starts.