Rare Renal

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

RaDaR recruitment update – September 2019

As of 1st September there are 23,814 UK patients in RaDaR from 101 hospitals. In August there were 252 new recruits. Recruits by cohort and hospital can found below. Recruits by cohort Recruits by hospital

Read more Posted on: 02.09.19 | Posted in News, NIHR, RaDaR, RDGs, Research

RaDaR recruitment update – August 2019

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, 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

Further research opportunities

As 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, Research

RaDaR recruitment update – July 2019

As 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, Research

Pregnancy guideline for review

The 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, 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

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

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