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.
Author: Melanie
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.
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:
Further 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 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.
RaDaR 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.
Pregnancy 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, referring to the guideline/page/line in question (not as tracked changes) to Melanie.Dillon@renalregistry.nhs.uk by Friday 28th June.
RaDaR Vacancy
RaDaR is hiring! New Bristol-based role to help with re-consenting and NURTuRE data checking.
New 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 and data entry are available to download from https://tinyurl.com/BK-Neph-data or on request from Melanie.Dillon@renalregistry.nhs.uk
Hyperoxaluria 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 patient with PH1: eGFR>45 and 24h U Oxalate >700 umol/24h
•Adult patient with PH1 or 2: eGFR>30 and 24h U Oxalate >600 umol/24h
•Adult patient with PH1,2 or 3: eGFR between 15 and 90 and relatively high urine oxalate (likely to give plasma oxalate>10 umol/l but it is not necessary to measure this)
•Adult with enteric hyperoxaluria: eGFR>30 and 24h U Oxalate >550 umol/24h
These are with investigational products from Alnylam, Dicerna, Oxthera and Allena respectively.
Enquiries will be directed to the units conducting these trials. We are also happy to see patients as a one-off or on-going or just discuss details of these trials with patients or clinicians. If you are a patient or relative of someone with one of these conditions, please ask your doctor about these trials, or contact Melanie.dillon@renalregistry.nhs.uk
RaDaR opens its 100th site!
West Cumberland Hospital became the 100th site to open to recruitment for the RaDaR rare disease registry in April 2019.
Fabry Diagnosis Algorithm
The Fabry Rare Disease Group have developed a Diagnosis Algorithm to help with the identification of new patients.
