Patient Led Research Hub

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.

My Sjögren's Diary

A secure cross-platform database to track Sjögren’s Syndrome symptoms and 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.

ION

Lithium treatment and chronic kidney disease progression

Bipolar Disorder (BD) is a severe psychiatric disorder requiring life-long management, often spanning decades with onset in adolescence or early adulthood. Lithium can be an effective treatment, but is associated with tubular and glomerular kidney damage. Approximately 30% of patients taking lithium long-term will be diagnosed with early stage chronic kidney disease (CKD). Patients are generally advised to discontinue lithium if CKD stage 3 is reached, but there are very few resources available to inform this decision.

Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) service users want to learn more about the implications of long-term lithium use. We’ve teamed up with CPFT psychiatrists and University of Cambridge post-graduate students to analyse anonymised clinical data (lithium and kidney test results) from Addenbrooke’s Hospital between 1995-2018. The data set was approved and provided by Cambridge Clinical Informatics. Preliminary work is complete, and we’re now working on the manuscript.

KDT in r(20) Syndrome

Ring Chromosome 20 Syndrome (r(20)) is an extremely rare and under-diagnosed disease, characterised by refractory epilepsy. Ketogenic diet therapy (KDT) is a viable and accepted treatment for children with refractory epilepsy, but very little is known about its specific use in r(20). Ring 20 Research & Support UK would like to learn more about KDT prescription, challenges and benefits, with the aim of improving resources for r(20) patients and families.

To initiate this project, we completed a scoping literature review to understand the current use of KDT in refractory epilepsies. We composed two online surveys to assess KDT experience within the medical profession (EU), and r(20) patients, families and carers (global). We then hosted a workshop with r(20) families, neurologists, dieticians, and researchers to interpret the findings and plan our next steps. Starter Funds have been provided by the University of Cambridge Public Engagement Team.

Ring 20 Research & Support UK plan to present our work at UK and European neurological conferences in 2020, and we have submitted a manuscript for open-access publication. As r(20) is an ultra-rare disease, Ring 20 Research & Support UK will continue to take the project forward in collaboration with EpiCARE (the European Reference Network for rare and complex epilepsies).