News

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 […]

Read more Posted on: 13.11.18 | Posted in Uncategorized

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 […]

Read more Posted on: 06.11.18 | Posted in Guidelines, Pregnancy

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 […]

Read more Posted on: 26.09.18 | Posted in Cystinuria, News, Patient Information Days, RaDaR, RDGs, Research

ADPKD Guideline for review

  The draft of a new Renal Association Clinical Practice Guideline on Monitoring children and young people with, or at risk of developing Autosomal Dominant Polycystic Kidney Disease (ADPKD) is now available for review. Please send any comments – listing page/guideline number as appropriate – to Melanie.Dillon@renalregistry.nhs.uk by Wednesday 10th October.

Read more Posted on: 12.09.18 | Posted in ADPKD, Guidelines, News, RaDaR, RDGs, Research

ADPKD Information & Support Day – 15th September 2018 – Cambridge

  Place: Frank Lee Centre Hexagon, Addenbrooke’s Hospital, Cambridge, CB2 0SN Time: Saturday 15th September 2018, 9.30am to 4pm Hosted by: Professor Fiona Karet and the PKD Charity Talks and workshops on: The Basics of ADPKD Genetics and Screening Diet and Lifestyle Research Transplants New therapies Pain Registration Information: Online registration https://adpkdseptember2018.eventbrite.co.uk or contact Esther […]

Read more Posted on: 16.08.18 | Posted in ADPKD, Conference, News, Patient Information Days, RaDaR, Research

New RaDaR Cohort – MGRS

  RaDaR is now open to a new Cohort of patients – Monoclonal Gammopathy of Renal Significance (MGRS) – which covers the following conditions:   AH amyloidosis AHL amyloidosis AL amyloidosis C3 glomerulonephritis with monoclonal gammopathy Crystalglobulinaemia Crystal-storing histiocytosis Fibrillary Glomerulonephritis Immunotactoid/Glomerulonephritis with Organised Microtubular Monoclonal Immunoglobulin Deposits (GOMMID) Intracapillary monoclonal IgM without cryoglobulin Intraglomerular/capillary lymphoma/leukaemia Light […]

Read more Posted on: 03.07.18 | Posted in MGRS, News, Patient Information, RaDaR, RDGs, Research