Thanks to the generous support of Kidney Research UK, RaDaR will maintain it’s presence on the NIHR’s Research Portfolio until 31/03/2020. This ensures that recruiting sites will continue to receive financial support for every patient that they recruit to the rare disease registry.
Author: Melanie
Retroperitoneal Fibrosis Patient Involvement event – Saturday 2nd March
The Retroperitoneal Fibrosis Rare Disease Group are hosting a Public and Patient Involvement event on Saturday 2nd March in London in order to work together with patients and their carers to learn more about this rare condition and improve treatment.
International consensus guide on Fibromuscular Dysplasia
The first international consensus guide on the diagnosis and management of Fibromuscular Dysplasia has recently been published. This can be accessed at:
Fibromuscular Dysplasia updates
The Fibromuscular Dysplasia (FMD) Rare Disease Group have produced a update on their recent patient information day in Salford and a review of current literature.
Cystinosis Study Day, Saturday 26th January 2019
RaDaR Newsletter Winter 2018
The latest issue of the RaDaR Newsletter contains a summary of the year’s achievements and information about patient events in 2019.
NURTuRE Study for Nephrotic Syndrome patients
NURTuRE (the National Unified Renal Translational Research Enterprise) is a unique kidney biobank for chronic kidney disease (CKD) and idiopathic nephrotic syndrome (INS), covering England, Scotland and Wales, which has the potential to unlock answers to some of the biggest questions about CKD and INS.
Biological samples (plasma, serum, urine, DNA and tissue) from 3,000 patients with CKD and over 800 patients with INS are being collected and stored under strict Standard Operating Procedures for both academic and industry research worldwide. This will lead to a greater ability to identify patients who will benefit from better, earlier diagnosis and person-specific new treatments, leading to better health outcomes.
We need patient volunteers for NURTuRE – no extra hospital visits… just your consent to be involved in this exciting, pioneering study.
If you are a patient with NS at one of the participating renal units, you may be offered the opportunity to take part in the NURTuRE biobank study. If you haven’t yet been approached, and you are interested in participating, please ask the doctor or nurse at your renal unit.
NURTuRE is a research collaboration involving a charity, academia and industry, managed by Kidney Research UK and jointly led by the University of Bristol (NURTuRE-INS (NephroS) study) and the University of Nottingham (NURTuRE-CKD study).
Full details at www.nurturebiobank.org/patients
ADPKD Guidelines
A new Renal Association Clinical Practice Guideline has been published on Monitoring children and young people with, or at risk of developing Autosomal Dominant Polycystic Kidney Disease (ADPKD), co-written by members of the ADPKD Rare Disease Group
For further details please visit www.renal.org/guidelines
aHUS research opportunity
New RaDaR condition – Nephronophthisis (NPHP)
RaDaR is now open to a new condition – Nephronophthisis (NPHP).
No amendments or further approvals are needed to start recruiting these patients.
These patients should be entered into the renamed ARPKD/NPHP cohort on RaDaR. It is vital that sites then select either ARPKD or NPHP on the Primary Diagnosis tab so that we know which condition these patients have.
For any questions please contact Melanie.Dillon@renalregistry.nhs.uk
