CANCELLED – Cystinosis Study Day, Tuesday 19th September

Due to unforeseen circumstances the National Cystinosis Study Day has had to be postponed. The event will hopefully be re-scheduled for Spring 2018. Details will be published here once they are confirmed.   A National Cystinosis Study Day will be held on Tuesday 19th September 2017 from 9.30am – 4.30pm at the Post Graduate Centre, Queen Elizabeth […]

Read more Posted on: 06.07.17 | Posted in Clinician Event, Cystinosis, Patient Information Days

Proposed Ethics Amendment for RaDaR

  The RaDaR Operational Management Board and Rare Disease Group Leads have agreed to apply for an Ethics amendment to clarify the fact that RaDaR consent covers Patient View sign-up, subject to availability at individual renal units. The proposed amendment will also allow for data linkage to other registries, including the Hospital Episode Statistics (HES) […]

Read more Posted on: 20.06.17 | Posted in Ethics, Patient View, RaDaR, Research

RaDaR Case Study

  RaDaR features as a Case Study on the new Understanding Patient Information website, with the focus on supporting research into rare kidney disease.

Read more Posted on: 15.06.17 | Posted in Case Study, RaDaR, Research

ADPKD Info Day, 1st July, London

  Place: Monckton Lecture Theatre, St George’s Hospital, Cranmer Terrace, Tooting, London SW17 0RE Time: Saturday 1st July 2017, 9:30 am to 4 pm Hosted by: Dr Joyce Popoola, Dr Anand Saggar and the PKD Charity Learn about ADPKD (Autosomal Dominant PKD) and the latest research Find out more about the new drug, Jinarc (tolvaptan) […]

Read more Posted on: 05.06.17 | Posted in ADPKD, Patient Information Days

NephroS Newsletter, June 2017

  The latest issue of the NephroS Newsletter has details on the current accrual and a report from the recent Patient Information day in Bristol back in March. NephroS Newsletter June 2017

Read more Posted on: 01.06.17 | Posted in NephroS, Newsletter

ARPKD Family Day, 22nd July, Birmingham

  The PKD Charity are organising an ARPKD Family Day on Saturday, 22nd July 2017 at Uffculme Centre, Queensbridge Road, Moseley, Birmingham B13 8QY from 10 am – 3pm. The event will include: Keynote talks about ARPKD from the experts Roundtable discussions between parents, patients, doctors & scientists Supervised entertainment & activities for children and young people […]

Read more Posted on: 29.05.17 | Posted in ARPKD, Patient Information Days

Clinician Educational Meeting on RaDaR & Fabry Disease

  Prof Detlef Bockenhauer, chair of the Rare Disease Committee of the Renal Association, is hosting a forum to help clinicians and researchers to better understand RaDaR and Fabry Disease in particular. The event will be held during UK Kidney Week on Monday 19th June 2017 at the Pullman Hotel, Kings Dock, Liverpool, L3 4FP The meeting […]

Read more Posted on: 24.05.17 | Posted in Clinician Event, Fabry, RaDaR, Research

RaDaR Update following NHS Cyber Attack

  In regards to the recent cyber attack on the NHS, we want to reassure you that RaDaR has not been affected and that the patients’ data remains secure. Neither the RaDaR servers nor North Bristol Trust (where our admin team are based) have been affected by this attack. Although data transfer to Patient View […]

Read more Posted on: 15.05.17 | Posted in News, RaDaR

International IgA Nephropathy Grant

  The IgAN research group in Leicester has been given £2.7 million to establish the world’s first international registry of IgA Nephropathy patients. The registry will follow the same format as RaDaR and will collect clinically characterised data from IgA Nephropathy patients across Europe, Asia and South America. University Of Leicester’s Press Release

Read more Posted on: 09.05.17 | Posted in IgAN, International, RaDaR, Research