News

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

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

GDPR Update

To ensure that RaDaR is compliant with the new General Data Protection Regulations, which came into force on May 25th 2018, two Privacy Statements have been produced  to cover both Rare  Renal and RaDaR.  The documents detail what data is collected from patients and how it stored, linked and accessed. Rare Renal Privacy Notice RaDaR […]

Read more Posted on: 14.03.19 | Posted in GDPR, News, RaDaR, 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