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An update of our successful Bristol Roadshow

Friday, March 20, 2020

An update of our successful Bristol Roadshow

An update of our successful Bristol Roadshow on ‘World Kidney Day’ the 12th March at Bristol research labs.

Bristol App Roadshow 

An update of our successful Bristol Roadshow on ‘World Kidney Day’ the 12th March at Bristol research labs.

Our second UK Roadshow led by NeST young ambassadors was very successful. Cade Morant warmly welcomed everyone followed by David Cook demonstrating the new software application (module) on Patient View. The Nephrotic Syndrome app, is NOW LIVE and can only be accessed via the Patient View platform. You need to sign up to Patient View to use app, please remember! If you are not already signed up, please ask your consultant, or community nurse to arrange access online by contacting the patientview team, or alternatively you can do this via the Patient View website. The majority of hospitals do have the Patient View facility, there are only a few exceptions who cannot provide this service currently.

We had a great day, with attendees enjoying rare tours to see the laboratories where world leading research is taking place and meeting some of the researchers in person and discussing how their research studies are developing using the most up to date technology. We also had a series of talks given kindly by Shahid Nazir Muhammad from RSPG https://www.researchgate.net/profile/The_Renal_Patient_Support_Group talking on ‘Health Literacy and Chronic Kidney Disease for World Kidney Day’ followed by Professor Moin Saleem talking on ‘Patient Registries and Cohorts – What are they used for? and finally Dr Gavin Welch  gave a fabulous talk on ‘Laboratory Research into the causes of Nephrotic Syndrome’.  After Lunch a well-known and talented illustrator Eleanor Beer illustrated stories of people’s journeys living with Nephrotic Syndrome whilst Dr Carl May(postdoctoral research associate)  recorded podcasts of each person too. The illustrated stories will be shown at the Cardiff Roadshow in Feb 2021.

It was also great to have Suzanne Watkin present who kindly assisted us on the day who incidentally works as a NeST volunteer in the Bristol labs for one day each week. So, a successful day and thanks to all who came, took part, and helped.  We look forward to our next roadshow,to demonstrate the app again, but importantly we also look forward to the NS community giving us feedback over the next coming months on how  we can further develop it, to be the most effective tool it can to not only monitor dipstick results, blood pressure recordings etc as well as accessing past history of blood results to manage your daily health. The app will also prove to be a valuable tool which can be shared with your carers, consultant and other key professionals! I hope you will be excited enough to use this app to its full potential to not only help your day to day management, knowing it's a very important tool for researchers as data is saved behind the NHS firewall and downloaded securely to the Renal registry https://www.renalreg.org/

 Best wishes Wendy Cook

 

 

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