New on-line portal launched to support research collaboration in kidney disease
The Kidney Research data portal (KRDP) is now available online, allowing researchers with an interest in kidney disease to access an up-to-date searchable listing of datasets that might support their own research. Championed by the UK Renal Health Data Research Network (UKRHDRN) and administered by Kidney Research UK and the University of Leicester, the KDRP will allow important new studies designed to benefit patients living with kidney disease.
Supporting data research
Not all research is lab or hospital-based, some scientists use healthcare records or create datasets of their own to answer important medical questions. Like traditional clinical trials, this type of investigation must be done carefully, ensuring that the privacy of patients is respected.
Health data allows researchers to look for patterns and trends in big populations, helping us to better understand how and why people respond differently to medications or their disease develops in a particular way. Looking at health datasets may also support new ways to diagnose diseases earlier, or in a less intrusive way, and identify new ways to improve clinical care.
There are many health kidney disease datasets about in the UK, but not all researchers know about them. Bringing together information on available datasets has the potential to support crucial new studies benefiting those living with kidney disease.
Introducing the KRDP
The KRDP is a searchable listing containing information about healthcare datasets; it does not hold any patient information. Researchers can use the portal to search for datasets that might support their studies or share their own information. However, if an investigator would like access to a dataset to support their research, they must apply directly to the group who created it. The contact details will also be available through the portal.
Miranda Scanlon, kidney transplant patient and co-chair of the UKRHDRN, commented: “Research using health data allows much-needed progress and innovation in the diagnosis and care of kidney patients. For this to be successful, scientists need to be able to share, discover and gain access to existing datasets in a secure and accountable way. The UKRHDRN are delighted that our first major project, the KRDP, is now live offering a safe, searchable portal, supporting collaboration in kidney research teams across the UK.”
A new approach to ensure maximum benefit for kidney patients
Kidney Research UK is committed to supporting studies designed to improve the lives of the kidney patient community, and through the KRDP we hope that many successful collaborations using health data will be possible.
Tracey Murray, director of programmes at Kidney Research UK added: “Working with expert advisors and the University of Leicester, the network has developed the KRDP to encourage safe, transparent collaboration in data research designed to benefit patients living with kidney disease. By providing a single location for researchers to list details of their kidney disease datasets, the KRDP supports collaboration between researchers across the UK. We look forward to seeing real benefits for our patients.”