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...
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 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...
View ArticleRaDaR Ethics Extension
The RaDaR rare disease registry has been granted a five year recruitment extension from the South West – Central Bristol Research Ethics Committee. This extends recruitment through until 09/10/2024....
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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...
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