News: PREDICT RaDaR Pregnancy Study

Kidney Research UK are funding the PREDICT study (PREgnancy-associated progression of chronic kidney Disease: development of a Clinical predictive Tool), led by Dr Kate Bramham and her team at King’s College London. The team will create a new dataset from linkage between National Registry of Rare Kidney Diseases (RaDaR), the UK Renal Registry (UKRR) and Hospital Episode Statistics and Maternity Services datasets held by NHS Digital to identify women with kidney disease who have had pregnancies. Patient identifiable information (NHS number and Date of Birth) will be handled only by the Renal Association, the organisation which runs both RaDaR and the UKRR and in a coded form by NHS Digital who will provide maternity data. The information released to the research team at King’s College London by National Registry of Rare Kidney Diseases and UK Renal Registry will not contain any identifiable data. This study will contribute to development of a predictive tool to estimate the amount of pregnancy-associated progression and adverse pregnancy outcomes in women with CKD including those with rare renal diseases. If you would like more information about the study please contact Dr Kate Bramham kate.bramham@kcl.ac.uk.

If you DO NOT want your data to be used in this way please contact Garry King; RaDaR Data and Operations Officer; Garry.King@RenalRegistry.nhs.uk, The Renal Association, Brandon House Building 20A1, Filton20, Southmead Road, Bristol, BS34 7RR. T: 0117 4142088.

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