Active Research
DRINK
Determining feasibility of randomisation to high vs. ad libitum water intake in Polycystic Kidney Disease: the DRINK Randomised Feasibility Trial
Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a common inherited condition where unrelenting cyst growth can cause kidney failure. Some research suggests that drinking water beyond the point of thirst can slow cyst growth by suppressing the hormone vasopressin.
Proposed by the UK PKD Charity, DRINK assesses if ADPKD patients can reliably drink enough water to warrant a large-scale trial. 42 participants were divided into ‘high’ and ‘ad libitum’ water intake groups. Preliminary analysis shows successful separation of trial arms: after 8 weeks the ‘high water’ group maintained dilute urine at a level signifying reduced vasopressin production.
Funding was provided by the British Renal Society and Kidney Care UK (formerly British Kidney Patient Association) grant programme, PKD Charity, Addenbrooke’s Charitable Trust, and Kidney Research UK. Trial registration NCT02933268 and ISCRTN16794957.
K+ Monitor
Hand-held potassium monitor for home use in Gitelman Syndrome
Gitelman Syndrome (GS) is a rare kidney disorder where magnesium, potassium and salt are wasted into the urine instead of being re-absorbed into the blood stream. Patients take high doses of multiple supplements every day to compensate for the lost electrolytes, but this causes unpleasant gastrointestinal side effects and presents a high medication burden.
Patient members of Gitelman Syndrome UK proposed the idea of a hand-held, finger-prick device that could be used to monitor their blood potassium levels. The device would be similar to glucometers with disposable chips used regularly by diabetics. An immediate reading of blood potassium would enable patients to dose accordingly, ideally reducing the number of tablets and subsequent side effects.
In collaboration with the Department of Chemistry, University of Cambridge and funded by Kidney Research UK and Addenbrooke’s Charitable Trust, the device and sensors have been developed. The team are now consulting widely with GS patients on the desired interface and predicted use, to better design the device. If you’d like to be involve with this study, please contact the My Potassium Sensor team; if monitoring your blood potassium at home is relevant to you, please complete this short, anonymous survey.
Sjögren's Syndrome patient portal
A secure cross-platform database to develop patient-led research
The Cambridgeshire regional support group for the British Sjögren’s Syndrome Association (Cambridge BSSA) is very interested in a wide range of research topics. Together, after consulting with rheumatologists and other patient groups, we decided the best way to serve their ambitions would be to create an online patient portal.
The portal will be a safe, secure and encrypted website and app, enabling patients with Sjögren’s Syndrome to interact with their own health data. It will also act as a platform for patient led research: participants can choose to enrol in approved trials, complete home-based tests and enter their own data.
Our co-produced (Cambridge BSSA, Northeast Sjögren’s Syndrome Association, rheumatologists and database programmers) grant application to the British Sjögren’s Syndrome Association 2018 Research Award has been successful, and we look forward to moving forward on this project.