Software innovation to help the ongoing management of coeliac disease
Research type
Research Study
Full title
Software innovation to help in the ongoing management of coeliac disease
IRAS ID
266020
Contact name
Matthew Kurien
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS FT
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Coeliac disease affects around 1%, of the adult population in the UK, yet only about 25-30% of these people have been diagnosed. Currently, the only accepted treatment for Coeliac disease is lifelong adherence to a gluten-free diet, which incurs challenges over dietary adherence. National and international guidelines advocate long-term follow-up for Coeliac disease. Despite follow up being advocated in guidelines, data from a recent Coeliac UK survey suggests that only about 50% of people with coeliac disease have annual follow up. Improvements to follow-up care could potentially be made by tailoring requirements to meet the individual needs of patients. It is recognised that some people with coeliac disease adapt well to dietary modification, and therefore require minimal ongoing support or care, whilst others need more intensive monitoring. This study will examine how Penguin, a novel software tool developed by Cievert can be used to support patient self-care in the management of coeliac disease. This work has potential benefits in improving long term outcomes for people with coeliac disease, which could in the long-term help reduce NHS costs. This study will recruit adult patients with newly diagnosed coeliac disease or patients who are currently under active follow up for the condition from Sheffield Teaching Hospital NHS Foundation Trust. The Penguin software will include questions on clinical outcomes such as current symptoms, whether annual follow up has been performed, if annual haematological and biochemical tests have been undertaken and if relevant osteoporosis assessments have been made. There will be an opportunity for patients to input their own data such as blood results, height and weight, alongside the opportunity to collect patient reported outcome measures (PROM) data. The aim of this is to determine the feasibility and acceptability of Penguin to remotely monitor patients and how they are living with coeliac disease.
REC name
North of Scotland Research Ethics Committee 2
REC reference
19/NS/0133
Date of REC Opinion
31 Jul 2019
REC opinion
Favourable Opinion