Nephrotic Syndrome App
Nephrotic Syndrome (UK) App
Nephrotic Syndrome UK app was designed and built by Citrus Suite in partnership with the UK Kidney Association (UKKA), NeST Young Ambassadors, NeST members, and nephrologists. Our hope is the app will help support you with the daily management of your condition; enable you to share your regular urine dipstick results, medications, hospitalisations with medical staff; share similar information if you take part in research and keep you up to date with the latest news and events.
Your information uploaded regularly onto the App will be very useful for your clinician to help monitor your disease more accurately. You will be able to share the data with him/her e.g., at clinic visits, which will enable him/her to assess important aspects such as disease activity, response to treatments and infections, and advise you better about management.
Additionally, the data will be available (anonymously) to researchers to help learn more about the disease. NS is a rare disease, and by collating detailed information from many different patients, we can learn about patterns of disease, patient-related issues, rare side effects etc. This will be crucial to help improve management and ultimately cure the disease.
The information you put into the NEST app or via PKB will be collected and stored on secured servers run by the UK Kidney Association (UKKA). The UKKA is a charity ( ) that collects information about kidney patients to audit the quality of kidney care provided by the NHS. They also support research into kidney disease through their two clinical registries, the UK Renal Registry (UKRR) which supports research into treatments and practices which will improve the outcomes for kidney patients across the UK, and the National Registry of Rare Kidney Diseases (RaDaR) which focuses on rarer kidney conditions such as NS.
It is important you sign up to the Patient Knows Best information portal This allows you to see your (or your child’s) laboratory results, with simple explanations of each test. Additionally, and importantly this data (with your consent) will be added to the anonymised information that the researchers can utilise. This builds layers of powerful information about your disease that can drive new discoveries in NS. In the future we hope to link this app to the Patient Knows Best information portal. To sign up for the renal registry please kindly ask your consultant for the consent forms.
Download the Nephrotic Syndrome App (UK), on the App Store or Google Play.