An update of our successful Bristol Roadshow on ‘World Kidney Day’ the 12th March at Bristol research labs.
Nest App Project and Roadshows latest updates
Welcome to our roadshow page
Each of the Road Shows will also feature additional special content on the day depending on the venue for subjects that impact those with NS or their families. This will add to the day significantly. These ‘mini days’ should be a great opportunity to get to know each other as well as being informative.
The first Road Show took place last November in Nottingham on Friday 15th November 10am-3pm and at the venue for our last patient day, the Playhouse Theatre.
Additional Road Shows will take place at Bristol on Thursday 12th March 2020 (World Kidney Day), Birmingham on June 24th-26th 2020 - part of UK Kidney week (people must register for this event please note!), Manchester University, Saturday 13th June 2020 – This is part of an International researchers ‘Podocyte’ conference. Glasgow - September 2020 date TBC shortly.
Important please note due to Covid -19 pandemic we have had to sadly postpone Birmingham,Manchester and Glasgow Roadshows until next year. I'll inform you of new proposed dates as soon as possible. In spring 2021 our annual patient day will be held in London at the Evelina Hospital (St Thomas's) and an app roadshow to be held at the University Hospital Cardiff on 'Rare Disease Day' February 2021 Sunday the 28th of February (subject as to whether its safe to gather,if looking unsafe we may have to postpone to a later date).
The 'software app' is in production and this is the specification of it below.
The following are the tech spec requirements:
- Relapses – date of onset.
- Date of Remission.
- Allergic Reactions
- Daily Urine Dipstick – Diary/chart to show clinicians.
- Colour Coded Remission/Relapses.
- Able to view daily Protein Dip Chronologically, aligned with clinician parameters e.g: date medication changed/
- Weight – in Kg. above dry weight.
- Signs of Oedema – Ability to record which areas of the body are affected.
- Immunisation Dates.
- Medication – Dose, Dates Started/Stopped, changes in dosage – for all medications.
- Adverse Reactions to Medication – short/long term.
- Hospitalisations – Primary Reasons and Dates.
- Blood Pressure.