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.firstname.lastname@example.org
Help us bring together millions of people across the world and unite with one powerful voice for kidney health awareness.
World Kidney Day in the UK is led by the Kidney Charities Together group (Kidney Care UK, Kidney Research UK, NKF (Kidney Patients UK) and the PKD Charity). Help us bring together millions of people across the world and unite with one powerful voice for kidney health awareness.
Over 180 support packs have already been sent out to renal and transplant units as well as individuals and patient groups supporting the day by organising an awareness activity or event.
What are you planning, following the 2019 global theme of Kidney Health for Everyone Everywhere?
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).
The Renal Association’s Patient Information Sub-committee aims to develop and maintain a high quality patient information resource for use by kidney doctors, patients, families and carers in the UK. The work is carried out in partnership with Kidney Care UK