News

2019 RaDaR meeting

On Monday 2nd September 2019 a joint patient and clinician event was held at in London to discuss current and future research around the RaDaR rare disease registry, as well as ways to boost patient engagement in research.  The agenda, a report from the day and pdfs of the presentations can be found below. RaDaR […]

Read more Posted on: 05.09.19 | Posted in ADPKD, ARPKD, Clinician Event, Clinician Information, Conference, Ethics, GDPR, International, NephroS, Nephrotic Syndrome, News, NIHR, NURTure, Patient Information, Patient Information Days, Patient View, Pregnancy, RaDaR, RDGs, Research

Care coordination research opportunity

COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how services are currently coordinated for rare conditions and how they should be coordinated in the future. The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with […]

Read more Posted on: 07.08.19 | Posted in Clinician Information, News, NIHR, Patient Information, RaDaR, Research

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