We asked you to tell us about your unanswered questions concerning coeliac disease which may be answered with further research to help to improve the lives of those living with the condition.
Hundreds of you completed the online survey and we collected well in excess of 600 questions. We grouped the questions into themes using the key research areas listed within our Research Strategy:
- aetiology; cause, risk or development of disease
- prevention of disease and promotion of wellbeing
- detection, screening and diagnosis
- development of treatments
- evaluation of treatments
- management of disease
- health services
- the gluten-free diet.
While processing your questions we created two further groups, one for improving our communications and the second for questions outside the scope of the Research Strategy. Almost 40% of the questions fell within these two groups.
The communications group includes questions, which to some extent, have already been answered by research eg are my children more likely to have coeliac disease if I have the condition? We already know from research that first degree relatives of someone with the condition have a one in ten chance of having coeliac disease compared with a risk of one in 100 for the general population.
We would like to bring Members diagnosed with coeliac disease together with healthcare professionals and researchers to create a priority setting partnership and gain a consensus on the priority research areas in coeliac disease. Several other charities have had very successful partnerships and by raising the profile of the research needs for their particular cause, they have been able to attract funding to answer some of the top ten unanswered questions.