Rare Renal

New RaDaR condition – BK Nephropathy

We are pleased to announce that RaDaR is now open to a new condition – BK Nephropathy. No new approvals are needed to start recruiting these patients. Detailed instructions on the inclusion criteria and data entry are available to download from https://tinyurl.com/BK-Neph-data or on request from Melanie.Dillon@renalregistry.nhs.uk

Read more Posted on: 01.05.19 | Posted in BK Nephropathy, Clinician Information, News, Patient Information, Patient View, RaDaR, RDGs, Research

Hyperoxaluria research trials

There are trials for adult patients with primary hyperoxaluria types 1, 2 & 3 and enteric hyperoxaluria, which are all recruiting or about to start. Here are the key inclusion criteria: •Adult patient with PH1: eGFR>45 and 24h U Oxalate >700 umol/24h •Adult patient with PH1 or 2: eGFR>30 and 24h U Oxalate >600 umol/24h […]

Read more Posted on: 01.05.19 | Posted in Clinician Information, News, Patient Information, RaDaR, RDGs, Research

RaDaR opens its 100th site!

West Cumberland Hospital became the 100th site to open to recruitment for the RaDaR rare disease registry in April 2019. Full list of participating hospitals

Read more Posted on: 11.04.19 | Posted in News, RaDaR, Research

Fabry Diagnosis Algorithm

The Fabry Rare Disease Group have developed a Diagnosis Algorithm to help with the identification of new patients.

Read more Posted on: 01.04.19 | Posted in Clinician Information, Fabry, News, RaDaR, RDGs, Research

RSM meeting – 8th May

The Royal Society of Medicine (RSM) are hosting an event on Rare diseases and the kidney on the 8th May 2019 at Salford University, Media City Campus. This high quality meeting will bring experts from a wide variety of rare disease areas together to present the latest updates and developments in rare diseases. The meeting […]

Read more Posted on: 22.03.19 | Posted in Clinician Event, Conference, News, RaDaR, RDGs, Research

RaDaR Newsletter Spring 2019

In celebration of World Kidney Day the latest edition of the RaDaR rare disease registry newsletter contains important information about our NIHR Portfolio extension and details of forthcoming patient and clinician information events. RaDaR Newsletter Spring 2019

Read more Posted on: 14.03.19 | Posted in ADPKD, Clinician Event, Conference, Cystinuria, Fibromuscular Dysplasia, GDPR, News, Newsletter, NIHR, Patient Information Days, RaDaR, RDGs, Research, Vasculitis, World Kidney Day

World Kidney Day 2019

Help us bring together millions of people across the world and unite with one powerful voice for kidney health awareness. World Kidney Day in the UK is led by the Kidney Charities Together group (Kidney Care UK, Kidney Research UK, NKF (Kidney Patients UK) and the PKD Charity). Help us bring together millions of people […]

Read more Posted on: 05.03.19 | Posted in Clinician Event, International, News, Patient Information, RaDaR, RDGs, Research, World Kidney Day

Vasculitis Education Day

We are pleased to announce the inaugural UK and Ireland Rare Disease Group Vasculitis Education Day will be held on Thursday May 16th 2019 at Salford Royal Foundation Trust. Programme The day is predominantly aimed at renal and rheumatology trainees and junior consultants but is open to any interested health care professional. This event is free of charge to […]

Read more Posted on: 01.03.19 | Posted in Clinician Event, Conference, News, RaDaR, RDGs, Research, Vasculitis

ADPKD Patient Information Day – Saturday 30th March, Aintree

The PKD Charity will be hosting the next ADPKD Patient Information Day on Saturday, 30 March 2019 from 10:00am – 16:00pm at Aintree University Hospital Lower Lane, Liverpool. L9 7AL The event is free to attend and will include talks on: The Basics of ADPKD Genetics Diet and Lifestyle Research Transplants Lunch and refreshments included […]

Read more Posted on: 28.02.19 | Posted in ADPKD, Clinician Event, Conference, News, Patient Information Days, RaDaR, RDGs, Research