A summary and photos of the recent ADTKD/UMOD Patient Information Day can be found below.
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
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.
The latest issue of the RaDaR Newsletter contains information about our compliance with the new General Data Protection Regulations (GDPR) and forthcoming events for HNF1B and ADPKD patients.
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
- New therapies
There is no charge to attend but a donation is always welcome. Refreshments and lunch included.
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
- 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