Patient Led Research Hub

Chronic Daytime Fatigue in Lipodystrophy

Lipodystrophy is a group of genetic or acquired disorders where the body is unable to produce and maintain healthy fat tissue. Lipodystrophy UK contacted the PLRH with a ‘top 10’ list of research priorities in July 2016. We worked with the patient membership through an online, anonymous survey to learn more about the diagnosis and further refine the research questions. We also met with medical experts from the National Severe Insulin Resistance Service at Addenbrooke’s Hospital. Together we prioritised research into chronic daytime fatigue: unfortunately many patients feel their chronic fatigue is not diagnosed or treated properly, despite its severe impact on quality of life.

We added experts from the Newcastle Centre for Fatigue Research to our project team, and are pleased to announce that our funding application to Addenbrooke’s Charitable Trust has been successful. We are now working with database programmers to create a website to support both home-data entry and clinical data.

Employment Support in Invisible, Fluctuating Conditions

Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease that can affect any part of the body. It’s often referred to as an ‘invisible’ disease with symptoms fluctuating through flares, relapses and remissions throughout life.

Lupus UK contacted the PLRH in January 2019 for support on a new research project investigating challenges to employment for people with SLE and other invisible, fluctuating conditions. Lupus UK initiated work on this project with a national, online patient survey to identify employment challenges and development opportunities. You can read their report here. We have since been awarded Addenbrooke’s Charitable Trust funding to interview NHS managers and occupational/vocational therapists to learn more about how employees are currently supported.

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 considering a full funding application.

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.

EASE-PKD

Evaluating Chronic Pain in ADPKD using a Patient-Centred Approach to Data Collection and Synthesis: A National Prospective Observational Study

Following the success with DRINK, PKD Charity submitted a second proposal to the PLRH, focusing on chronic pain interventions in autosomal dominant polycystic kidney disease (ADPKD). Chronic pain affects 60% of ADPKD patients and can severely impact quality of life. This is a high priority for patients but unlikely to receive industry funding. The PLRH, PKD Charity, 8 patients and international nephrologists held a workshop in May 2017 to explore the topic and consider feasible trial designs.

We are pleased to have been awarded funding from NIHR Research for Patient Benefit to conduct an observational study and validate an ADPKD pain assessment tool.

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. Led by Prof Fiona Karet, the team went on to found Kalium Health Ltd to help support this project and other future research, and are continually consulting with patients. They are now working on a ‘proof of concept’ study. If monitoring your blood potassium at home is relevant to you, please complete this short, anonymous My Potassium Sensor survey.