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