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 missed.
Until her successor is in post, for any queries relating to RaDaR and RareRenal please email nbn-tr.RADAR@nhs.net
As of 1st November 2019 there are 24,588 patients in RaDaR from 102 hospitals. In October there were 444 new recruits, making it our best month this year. Recruits by cohort and hospital can found below.
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
The Hypokalaemic Alkaloses cohort has been renamed Tubulopathy. It now includes the following conditions:
A precise diagnosis will need to be selected when entering these patients in RaDaR.
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. The themes identified in the survey will feed into a framework to follow the current UK Strategy on Rare Diseases, which runs until the end of 2020.
The survey will take around 10-20mins to complete and is open to the rare disease community across the UK, including patients, families and carers, rare disease medical professionals and GPs, clinical academics and industry experts.
The survey can be accessed at:
https://dhsc-mail.co.uk/form/Sx1iaZDJ/12fe439d08333dcf0e23be36/
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.
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 together – from people living with TSC and their loved ones to clinicians and academics – to share experiences, get to know each other and hear about all-things TSC. You can expect to:
For more information and booking details please visit:
The Renal Association have published a new Clinical Practice Guideline on Pregnancy and Renal Disease, written by members of the RaDaR Rare Disease Group.
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.
Presentations
Current status of RaDaR – Melanie Dillon, RaDaR Operations Officer
Ethics and re-consent – Dr Kate Bramham, Rare Diseases Committee Deputy
ADPKD – Dr Regada El-Damanawi, Research Fellow
NephroS/NURTuRE – Prof Moin Saleem, Paediatric Nephrologist, Bristol
PREDICT – Dr Kate Bramham Rare Diseases Committee Deputy Chair
ERKNet – Tess Harris, PKD Charity
NIHR BioResource – Dr Kathy Stirrups, Head of Sample Management
NCARDRS – Mary Bythell, Head of Rare Disease Registration
NHS Digital – Jackie Shears, Associate Director, Data Acquisitions
Patient Council and information resources – Fiona Loud, Kidney Care Policy Director
Kidney Research UK support – Pete Storey, KRUK Rare Disease Programme Lead
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.
