Recruiting for research
Researchers often need information from people with coeliac disease and their families to help them understand the condition better.
Current projects recruiting for research
Project 1: Opportunity for adults with coeliac disease on a gluten free diet who still experience symptoms to participate in a clinical trial.
Pharmaceutical company, Dr Falk, are looking for adults with coeliac disease to take part in clinical trials across the UK. Currently the only treatment for coeliac disease is a strict gluten free diet but we know that for many people continue to experience symptoms.
The purpose of this study (CEC-013/CEL) is to learn if the study drug (ZED1227) in combination with a gluten free diet, can reduce gastrointestinal symptoms of coeliac disease by reducing damage to the small intestine.
You may be eligible to participate if:
- You are aged between 18 and 80
- You have a medical diagnosis of coeliac disease confirmed by biopsy, more than 12 months ago
- You have been following a gluten free diet for at least 12 months but continue to experience symptoms.
- You are NOT pregnant or breastfeeding
Unfortunately, people with other health complications are unlikely to be considered for this particular trial.
This is a double blind, randomised, placebo-controlled trial. This means that you will be randomly assigned to receive either the drug that is being tested or a placebo and neither you, nor the clinician assigned to your care will know if you are taking the drug or the placebo. This is to eliminate bias. A placebo is an inactive substance that looks like the active drug and is administered in the same way as the active drug so that the effects of the active drug can be compared to the effects of the placebo. It is often a ‘sugar tablet’.
The study consists of 3 periods:
- Screening: 4 weeks
A study doctor will assess if you are suitable and you will be asked to provide informed consent. - Treatment: 15 weeks
You will take either the study drug or placebo as a capsule, orally, and be asked to eat a granola bar containing a small dose of gluten several times per week. You will complete a daily symptom diary and visit a doctor a number of times who will complete different tests. You will have two endoscopies during this period where biopsies will be taken. - Follow up: 4 weeks
A study doctor will monitor you post treatment.
There are currently 7 centres in the UK looking for people for this trial. If you would like more information about the trial or to be considered, please contact your preferred centre directly using the contact details listed below.
- Sheffield, England: Dominic Nash - dominic.nash@nhs.net / 01142265919
- Gwaelod-y-garth, Wales: Nichola Dale – nichola.dale@globalaes.com / 02920764455
- Buckshaw, England: Michelle Whittle – michelle.whittle@globalaes.com / 01772819600
- Manchester, England: Iain McGregor – iain.mcgregor@globalaes.com / 01616087790
- Liverpool, England: Iain McGregor – iain.mcgregor@globalaes.com / 01519201555
- Birmingham, England: Tobias Johnstone – tobias.johnstone@globalaes.com / 01214140303
- Hexham, England: Anthony Waine – anthony.waine@globalaes.com / 01434604483
Please note that by making contact or expressing interest, you are not obliged to take part. The contacts above should be able to answer any questions you may have and provide you with more detailed information about the trial.
Project 2: No biopsy diagnosis of coeliac disease
Coeliac UK is working with researchers at the University of Bristol on a project that is looking for support from patients and members of the public. It is important that there is patient and public involvement and engagement (PPIE) in the project to ensure that the research remains relevant to people with coeliac disease. The research team is inviting people living in and around the Bristol area who have a diagnosis of coeliac disease and parents/carers people with coeliac disease to form a patient and public involvement and engagement (PPIE) panel.
Summary of the project:
Current guidelines recommend that people at “high risk” for coeliac disease should be offered testing. Previous work by the team has shown that using individual symptoms isn’t helpful to identify people who may have coeliac disease as they are more likely to have a combination of symptoms. The work also showed that common blood tests for coeliac disease are very accurate, when used in combination with genetic testing and can confirm a diagnosis in some people. However, it is not yet clear when a blood test alone is sufficient and when a biopsy is needed.
The research team hopes to produce guidance on when a diagnosis of coeliac disease can be made without the need for a biopsy, and they need your support.
As a member of the PPIE panel you will be invited to attend 4 meetings during the course of the project. Expenses will be covered for in person meetings and you will be given plenty of notice.
- Meeting 1 - 10:30-11am, 30 January 2025 - online
- Meeting 2 – April 2025 - in person
- Meeting 3 – Nov 2025 – online
- Meeting 4 - July 2026 - in person
If you would like to be considered, please submit your details via this form.
If you would like more information about the project, please contact the Principal Investigator Martha at martha.elwenspoek@bristol.ac.uk.
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Different ways you can play a role in research
You can have an active and important role in research and there are many ways you can be involved:
- completion of a survey from home either online or by post
- completion of a survey away from home, for example, in a supermarket
- focus group
- one to one interview, face to face or over the phone
- gluten free food trial
- trials for new treatments
- providing a biological sample, for example, blood, urine, saliva, faeces.