NURTuRE Study for Nephrotic Syndrome patients

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).

Full details at www.nurturebiobank.org/patients

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

Survey on RA Guideline on renal care in pregnancy

 

We would like your feedback on the first UK guideline on renal disease in pregnancy, which has been commissioned by the UK Renal Association. The aim of the guideline is to improve and standardise the care of women with CKD who are planning a pregnancy, pregnant, or in the postpartum period.

The guideline has 97 statements that address the care of women with CKD prior to, during, and following pregnancy. These statements are divided in sections including structure of care, medication, pre-pregnancy and pregnancy care, renal transplantation, dialysis, lupus, diabetes and congenital abnormalities of the kidney and urinary tract. 

Via this survey (www.surveymonkey.co.uk/r/PregnancyCKD) your comments will inform the on going development of the guideline prior to publication in 2019. 

The survey is open to both patients and clinicians.

We would be grateful for your participation by Friday 14th December.
 
If you have any queries, please contact kate.wiles@kcl.ac.uk

With many thanks, 

Kate Wiles (on behalf of the Pregnancy and Renal Disease Guideline Group)
NIHR Doctoral Research Fellow in Obstetric Nephrology
King’s College London

Cystinuria Patient Day – Saturday March 30th 2019 – London

 

A National Cystinuria Patient Day will be taking place on Saturday March 30th 2019 at Guy’s Hospital, London

The event is free to attend for patients and relatives but registration is essential via the CystinuriaUK website.

A draft programme is now available detailing the planned talks and discussion sessions.

For more information please visit www.cystinuriauk.co.uk/patient-day