Our charity Nephrotic Syndrome Trust (NeST) was awarded a grant by the Wellcome Trust to develop an app for those living with Nephrotic Syndrome. 'Citrus Suite' app developers in Liverpool are making great progress in its development and we hope to launch the app in June or July this year. We are working in close partnership with the Renal Registry, Clinicians/Researchers, and of course, consulting our NeST Young Ambassadors and other members of the NS community in its design and functionality.
It is hoped that those living with Nephrotic Syndrome will find the app a valuable and helpful tool in day-to-day self-management of their condition. Information stored on the app can be shared with their clinicians and potentially be a valuable source of data for Nephrotic Syndrome Researchers to help gather data in future clinical trials too.
We encourage all those living with Nephrotic Syndrome living in the UK to kindly consider signing up for the Renal Registry ukkidney.org/about-us/who-we-are/uk-renal-registry to help accelerate research please. Please ask your consultant for information sheets & consent forms. Any problems please contact me wendy@nstrust.co.uk
Researchers are URGENTLY looking for more recruits to take part in the NURTuRE Enterprise studies. Eighteen NHS trusts are involved, if your hospital is not a NURTuRE study centre -don't worry you can enrol for NephroS study. Please visit this website www.nurturebiobank.org/ for more information and for further details for enrolment please speak to your consultant.
Please kindly consider taking part in this important study. So far 658 people have come forward, but we need to try and reach the figure of 800 with those living with idiopathic nephrotic syndrome.
Programme: -
7pm - Wendy Cook - Welcome & Introduction
7.15pm - Steve Donovan (Citrus Suite App developer) introduces the app and shares & demonstrates the new app. Followed by a Q & A session with Steve.
7.30pm - Professor Moin Saleem (University of Bristol) an update on the NURTuRE www.nurturebiobank.org/ study, how data is collected, and used for future scientific plans. Explaining the importance of the app in regards to collecting some of this data via the app syncing with the Renal registry. Followed by a Q & A session.
8pm - Professor Gavin Welsh (University of Bristol) 'Update on Lab Research into Nephrotic Syndrome'
8.15pm - Dr. Martin Christian (Nottingham Children's Hospital) PREDNOS 2 Study Results
jamanetwork.com/journals/jamapediatrics/fullarticle/2787006?guestAccessKey=f7cb7b61-5fad-406f-96ba-d3eeb2be2efe&
Can we prevent triggered relapses with a low dose daily steroid? Martin talks about the study and for the first time shares the published results with the NS community. Followed by a short Q & A.