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‘Investigating the use of technology to improve the long-term health of people affected by coeliac disease’
Dr Matt Kurien, Sheffield University are working with Cievert to further develop Penguin for use by people living with coeliac disease to assess how they are coping with their gluten-free diet.
The aim will be to provide more support to those that need it and to let those managing well get on with their lives.
Long-term care should be tailored to the individual need of the patient. Some patients will adapt well to the dietary modification and require minimal ongoing support or care, whilst others may require significantly greater intervention.
The project is seeking other clinicians nationally to be part of the research and who are happy to trial the software out for at least 12 months (the project runs until March 2021) and to provide their feedback.
Who can take part?
If you would like to take part in the study you must:
- Work clinically in the management of patients with coeliac disease
- Have an interest in coeliac disease & long-term follow-up
- Have approval from your IG & IT team
What is involved?
There is no expected cost associated with this project as it is fully funded.
You do not need any specialist hardware or software to take part in the project as everything is designed to run from any internet enabled computer, tablet or mobile device.
The research will require you to use the software with your coeliac patients, following the processes and procedures established by the project. Local variation in current patient management can be accommodated as part of the project as long as the research criteria is fulfilled.
In addition, you will also be free to use the software for any other gastroenterology patient following any follow-up routine you locally define.
Research content and process
The following sets out the base measurements required of the project:
- Clinical content will be stored and collected using Cievert’s Penguin software
- Clinical assessments will include:
- Adherence to a gluten free diet (CDAT questionnaire)
- Adherence to guideline recommendations (blood tests, weight, height, annual follow-up)
- Quality of Life (eq-5d)
- Patients will also be assessed regarding their use of the Penguin software
- Frequency of questioning will be at a minimum – baseline and annually.
How to take part
If you are interested in taking part in the study, or would like more information, please download the information guide below and/or complete the contact form. Alternatively, please contact Chris Kennelly at firstname.lastname@example.org. Please note that by making contact and showing an interest you are not obliged to take part in the study.
This is a study by the University of Sheffield and ethics approval has been sought by the University of Sheffield Ethics Committee. The study is funded by Innovate UK, Coeliac UK & Cievert.