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...
View ArticleRSM 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...
View ArticleFabry Diagnosis Algorithm
The Fabry Rare Disease Group have developed a Diagnosis Algorithm to help with the identification of new patients.
View ArticleRaDaR 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
View ArticleHyperoxaluria 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...
View ArticleNew 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...
View ArticleRaDaR Vacancy
RaDaR is hiring! New Bristol-based role to help with re-consenting and NURTuRE data checking. RaDaR Administrator
View ArticlePregnancy 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,...
View ArticleRaDaR 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...
View ArticleFurther 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...
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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....
View ArticleRaDaR 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...
View ArticleRaDaR 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...
View Article2019 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...
View ArticlePregnancy and Renal Disease Guidelines published
The Renal Association have published a new Clinical Practice Guideline on Pregnancy and Renal Disease, written by members of the RaDaR Rare Disease Group.
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Tuberous Sclerosis Big Day 2nd November 2019
The Tuberous Sclerosis Association’s (TSA) Big Day 2019 will take place on Saturday 2nd November at the Nottingham Belfry Hotel. Big Day is an opportunity for everyone in the TSC community to come...
View ArticleRaDaR recruitment update – October 2019
As of 1st October 2019 there are 24,133 UK patients in RaDaR from 101 hospitals. In September there were 312 new recruits. Recruits by cohort and hospital can found below. Recruits by cohort Recruits...
View ArticleNational survey on rare disease
The Minister for rare disease at the Department of Health and Social Care, Baroness Blackwood, recently announced a national conversation to understand how we can better care for people living with...
View ArticleArticle 1
Tubulopathy cohort conditions The Hypokalaemic Alkaloses cohort has been renamed Tubulopathy. It now includes the following conditions: • Autoimmune distal renal tubular acidosis • Autosomal dominant...
View ArticleNew RaDaR conditions
The Hypokalaemic Alkaloses cohort has been renamed Tubulopathy. It now includes the following conditions: Autoimmune distal renal tubular acidosisAutosomal dominant distal renal tubular...
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