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 is hiring! New Bristol-based role to help with re-consenting and NURTuRE data checking.
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
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
West Cumberland Hospital became the 100th site to open to recruitment for the RaDaR rare disease registry in April 2019.
The Fabry Rare Disease Group have developed a Diagnosis Algorithm to help with the identification of new patients.
The Royal Society of Medicine (RSM) are hosting an event on Rare diseases and the kidney on the 8th May 2019 at Salford University, Media City Campus. This high quality meeting will bring experts from a wide variety of rare disease areas together to present the latest updates and developments in rare diseases.
The meeting will be of relevance to medical students, trainees and consultants as it provides a unique opportunity to keep up to date with latest clinical developments, opportunities and research being conducted and MDT and patient partnerships for these conditions.
Topics include:
To ensure that RaDaR is compliant with the new General Data Protection Regulations, which came into force on May 25th 2018, two Privacy Statements have been produced to cover both Rare Renal and RaDaR. The documents detail what data is collected from patients and how it stored, linked and accessed.
In celebration of World Kidney Day the latest edition of the RaDaR rare disease registry newsletter contains important information about our NIHR Portfolio extension and details of forthcoming patient and clinician information events.
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?
Ideas for activities and downloadable resources are available from www.worldkidneyday.co.uk and you can apply for a support pack www.worldkidneyday.co.uk/order-support-pack/ but don’t delay – stocks are running low
Follow us on Facebook, Twitter or Instagram and share our daily Kidney Facts (from 7-14 March). You can also add a Facebook frameorTwibbon to your profile picture to show your support.
