News

Staffing update

Our Operations Officer Melanie is leaving us on Friday 1st November after 7 1/2 years with RaDaR and RareRenal. She helped re-launch this website (twice!) and supported a massive growth in recruitment for RaDaR, from just 280 recruits when she started in May 2012 to a massive 24,500 today. Thank you so much Melanie – you’ll be greatly […]

Read more Posted on: 01.11.19 | Posted in News, RaDaR, RDGs, Research

RaDaR 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. No changes were made to any of the study documents for this amendment as it was purely to extend recruitment. For more information please contact nbn-tr.radar@nhs.net

Read more Posted on: 30.10.19 | Posted in Ethics, News, NIHR, RaDaR, RDGs, Research

New RaDaR conditions

The Hypokalaemic Alkaloses cohort has been renamed Tubulopathy. It now includes the following conditions: Autoimmune distal renal tubular acidosis Autosomal dominant distal renal tubular acidosis Autosomal recessive distal renal tubular acidosis Autosomal recessive distal renal tubular acidosis Bartter Syndrome type 1 Bartter Syndrome type 2 Bartter Syndrome type 3 Bartter Syndrome type 4 Dominant hypophosphatemia […]

Read more Posted on: 29.10.19 | Posted in News, RaDaR, RDGs, Research

National 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 rare disease.  This survey aims to identify the major challenges faced by rare disease patients and the people and organisations that care for them. […]

Read more Posted on: 25.10.19 | Posted in News, RaDaR, RDGs, Research

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