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:
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.
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.
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 Genetic Alliance UK and others. They are currently looking for patients, carers and healthcare professionals to share their priorities and views about the coordination of care for rare conditions, via an online survey. The survey will take around 30 minutes to complete. The findings will be used to make recommendations with the aim of influencing policy.
The survey can be accessed at: http://bit.ly/concord-survey
Further information about the study can be found at:
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 Information pages for each condition.
