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

 

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 Wright at info@pkdcharity.org.uk

There is no charge to attend but a donation is always welcome. Refreshments and lunch included.

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 chain cast nephropathy
  • Light chain proximal tubulopathy, crystalline
  • Light chain proximal tubulopathy, non crystalline
  • Monoclonal Immunoglobulin Deposition Disease (MIDD; includes Light Chain Deposition Disease – LCDD; Heavy Chair Deposition Disease – HCDD; and Light and Heavy Chain Deposition Disease – LHCDD)
  • Proliferative glomerulonephritis with monoclonal immunoglobulin deposits – PGNMID
  • Thrombotic Microangiopathy with monoclonal gammopathy
  • Type 1 cryoglobulinaemic Glomerulonephritis
  • Unclassified MGRS

No new approvals are needed to start recruiting these patients.

A Crib Sheet of details of the conditions that are included in the MGRS cohort is available to download from https://tinyurl.com/mgrs-crib-sheet or from request via Melanie.Dillon@renalregistry.nhs.uk

New Rare Disease Committee Chair