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

RSM meeting – 8th May

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:

  • Expert overview of a number of rare diseases affecting the kidney
  • Best medical management and potential treatments 
  • Latest research, developments and opportunities for future research using the RaDaR network

Poster

RaDaR Newsletter Spring 2019

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.

RaDaR Newsletter Spring 2019

World Kidney Day 2019

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.

Vasculitis Education Day

We are pleased to announce the inaugural UK and Ireland Rare Disease Group Vasculitis Education Day will be held on Thursday May 16th 2019 at Salford Royal Foundation Trust.

Programme

The day is predominantly aimed at renal and rheumatology trainees and junior consultants but is open to any interested health care professional. This event is free of charge to attend and CPD event approval has been applied for.

To reserve a place please email hugh.cahill@addenbrookes.nhs.uk by Thursday 18th April.

ADPKD Patient Information Day – Saturday 30th March, Aintree

The PKD Charity will be hosting the next ADPKD Patient Information Day on Saturday, 30 March 2019 from 10:00am – 16:00pm at  Aintree University Hospital Lower Lane, Liverpool. L9 7AL

The event is free to attend and will include talks on:

  • The Basics of ADPKD
  • Genetics
  • Diet and Lifestyle
  • Research
  • Transplants

Lunch and refreshments included

To register please visit Eventbrite or email info@pkdcharity.org