CYSTINURIA UK
UK CYSTINURIA PATIENT DAY - We recently held a National Cystinuria Patient Day at The Freeman Hospital in Newcastle on Saturday 27th April 2024. This was co-ordinated by Professor John Sayer. The event was well attended and we heard some fanastic talks from the doctors and patients on the condition.
Cystinuria videos:
Management of cystinuria on the StoneSmart platform [recorded 2018]. This can be viewed on Vimeo by clicking here
Modern medical and surgical management of cystinuria. Video [recorded 2021] for ERN eUROGEN European Reference Network - this can be viewed on YouTube by clicking here
'Everything cystinuria' - click here for this podcast [published December 2022]
Latest publications:
Click here for a list of the latest worldwide publications related to cystinuria on PubMed
Click the link below for a list of our most recent publications.
Follow us on Twitter @cystinuriaUK
Click for our recent publications:
Cystinuria: An Overview of Challenges and Surgical Management - Frontiers in Surgery 2022
Cystinuria: clinical practice recommendation - Kidney International 2021
Water to prevent kidney stones: tap vs bottled; soft vs hard - does it matter - BJUI 2019
Hypertension and renal impairment in patients with cystinuria: findings from a specialist cystinuria centre. - Urolithiasis 2019
Stones: Predicting stone episodes using cystine capacity - Nature Reviews Urology 2016 - refers to this article in the Journal of Urology from Professor Pearle
Associating mutations causing cystinuria with disease severity with the aim of providing precision medicine. - BMC Genomics 2017
Can presence of crystals in the urine predict stone formation. - Journal of Endourology 2016
The role of protein modelling in cystinuria. - European Urology 2016
This website was written and designed by a group of interested health care professionals from Guy's and St. Thomas' NHS Foundation Trust and patients, all of whom felt that the current information on the web about cystinuria was limited, confusing and not particularly orientated to British patients. It has been designed to provide clear and concise information for cystinuric patients and/ or their friends and family. Our aim is threefold:
To help patients develop a better understanding of cystinuria.
To offer specific information about the investigation and treatment of cystinuric stones.
To improve the non-surgical management of stones, and in particular to improve efforts to prevent stones through changed diet.
Patients often have common themes to their presentation but because the disease is rare, may not meet other affected individuals, and so are unable to share their stories.
If you feel that anything is incorrect or if there is anything you would like to see on the this website then please contact us and let us know what you think via the Contact/ Feedback form.
The Team at CystinuriaUK
Miss Kay Thomas, Consultant Urological Surgeon
"I have a specialist interest in cystinuria and in particular the preventative measures which may be useful in helping patients have some control over the impact of their disease. I established a multi-disciplinary specialist clinic for cystinuria which has led to the development of this website."
Mr Matthew Bultitude, Consultant Urological Surgeon
Last Updated: April 2024
Hexagonal cystine crystals under a microscope