15,000th RaDaR patient recruited!

  The 15,000th UK RaDaR patient was recruited on the 10th October 2017. This is a fantastic achievement and a testament to all the hard work and support that the 87 currently recruiting hospitals have given to the project over the years. Many thanks to you all.

Read more Posted on: 10.10.17 | Posted in News, RaDaR

RaDaR Ethics Amendment Approved

  The latest RaDaR amendment has now been approved by Ethics. The main changes concern clarification that RaDaR consent covers Patient View Sign-up, subject to local availability, and that patients consent to being contacted directly by a member of the central RaDaR team and/or their Rare Disease Group Lead regarding information events or further research […]

Read more Posted on: 10.10.17 | Posted in Ethics, News, Patient View, Research

Cystinosis Rare Disease Lead Advert

  After over five highly successful years in the role, Dr Graham Lipkin is stepping down as lead for the Cystinosis Rare Disease Group and a replacement is now being sought. This is a real opportunity to lead an enthusiastic group of clinicians, in partnership with patients and Industry, to support improvement in patient service, […]

Read more Posted on: 03.10.17 | Posted in Cystinosis, RaDaR, RDGs

RaDaR Ethics amendment submitted

Following a review of our revised consent documents by NHS Digital, we have just submitted the latest RaDaR amendment to the South West – Central Bristol Research Ethics Committee. The main changes concern clarification that RaDaR consent covers Patient View Sign-up, subject to local availability, and that patients consent to being contacted directly by a […]

Read more Posted on: 21.09.17 | Posted in Ethics, News, Patient View, RaDaR, Research

Patient View Registration

  RaDaR consent covers Patient View sign-up – subject to availability at each renal unit.   Research staff – please add your patients to Patient View once they have consented to RaDaR. This allows for an automatic transfer of blood and urine results from your renal IT system, to Patient View and on into RaDaR. Patients […]

Read more Posted on: 13.09.17 | Posted in Patient View, RaDaR

Primary Hyperoxaluria Webinar, 15th August

    The Oxalosis & Hyperoxaluria Foundation (OHF) and Dicerna Pharmaceuticals invite you to participate in a webinar on Tuesday, August 15, 2017 at 16.00 hours GMT to discuss research presented by Dicerna during the 12th International Workshop on Primary Hyperoxaluria in Tenerife, Spain in July. At the meeting, Dicerna announced the expansion of its […]

Read more Posted on: 11.08.17 | Posted in Clinician Event, International, News, Primary Hyperoxaluria, Research, Webinar

New aHUS website

  The National Renal Complement Therapeutics Centre in Newcastle has launched a new website – – containing information for both patients and clinicians on atypical haemolytic uraemic syndrome and C3 glomerulopathy. The site contains information about the diagnosis and management of aHUS, including patients who have end-stage renal failure and may benefit from the prophylactic use of eculizumab […]

Read more Posted on: 27.07.17 | Posted in aHUS, Research

IgAN Journal of Kidney Care Article

  The IgA Nephropathy Rare Disease Group have had an article published in this month’s issue of the Journal of Kidney Care.  The article discusses how having access to an international rare disease registry with data on this disease can help improve kidney care around the world. IgA Nephropathy: driving innovation with a rare renal disease registry.

Read more Posted on: 26.07.17 | Posted in IgAN, International, RaDaR, Research

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