As of 1st August 2019 there are 23,568 UK patients in RaDaR from 100 hospitals. In July there were 413 new recruits. Recruits by cohort and hospital can found below. Recruits by cohort Recruits by hospital
Read more Posted on: 09.08.19 | Posted in News, NIHR, RaDaR, RDGs, ResearchCOordiNated 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, ResearchAs well as taking part in the RaDaR Rare Disease Registry, we recommend that patients who are interested in research visit the NIHR’s new Be Part of Research website which allows you to search for studies by condition and/or location. Studies that are being led or endorsed by Clinicians involved in RaDaR are advertised on the Patient […]
Read more Posted on: 29.07.19 | Posted in Ethics, International, News, NIHR, Patient Information, RaDaR, RDGs, ResearchAs of 1st July 2019 there are 23,150 UK patients in RaDaR from 100 hospitals. In June there were 301 new recruits. Recruits by cohort and hospital can found below. Recruits by cohort Recruits by hospital
Read more Posted on: 02.07.19 | Posted in News, NIHR, RaDaR, RDGs, ResearchThe draft of the Renal Association’s Clinical Practice Guideline on Pregnancy and Renal Disease is now available for review. Please send any comments in the body of an email or as a text document, referring to the guideline/page/line in question (not as tracked changes) to Melanie.Dillon@renalregistry.nhs.uk by Friday 28th June.
Read more Posted on: 30.05.19 | Posted in Clinician Information, Guidelines, News, Pregnancy, RaDaR, RDGs, ResearchWe 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, ResearchThere 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, ResearchWest 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, ResearchThe 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
