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Coeliac Society of Ireland Survey 2022 – Autoimmune

Participant Information Leaflet & Consent Form

Study Title: The prevalence of other autoimmune conditions alongside coeliac disease

You are invited to participate in our research study. Thank you for taking the time to read this information leaflet, before you decide whether or not you wish to take part, you should read the information provided below carefully. You should clearly understand the risks and benefits of taking part in this study so that you can make a decision that is right for you. This process is known as ‘Informed Consent’.

Why are we doing this study:

  • It is common for coeliac disease and other autoimmune conditions to occur alongside each other, in individuals. The reasons for this are not well understood.
  • It is important to investigate the prevalence of both conditions occurring alongside each other is so that a better understanding of the relationship between both can be attained.  It is also important to evaluate this in an Irish population so the results apply to Ireland.
  • A survey looking into autoimmune conditions occurring alongside coeliac disease is an important step in understanding the rates that these co-occurrences take place and the prevalence of these co-occurrences in an Irish population.

Why am I being asked to take part?

You are eligible to participate in the study if you are 18 years old, have been diagnosed with either coeliac disease, gluten intolerance or dermatitis herpetiformis and are a member of the Coeliac Society of Ireland.

Who is carrying out this study?

This study is being carried out by Ms. Una Donnelly, Ms. Sarah Kiernan, Ms. Sarah Keogh and Ms. Jenny Flynn, working in the research department of the Coeliac Society of Ireland in collaboration with Sligo IT (Ms. Laura Kevaer).

How will the project take place?

If you agree to take part, you can click the link at the bottom of this page, which will direct you to the online survey. It should take no more than five minutes to complete.

What are the possible benefits of taking part?

This project will help inform the Coeliac Society about an important area of coeliac and gluten related disorder health and this will in turn direct the society in how best to support its members.

What are the possible risks of taking part?

We do not foresee any serious risks for you as an individual.

What if I want to withdraw from the study?

You don’t have to take part in this study, your participation is voluntary. If you do not want to participate you do not have to answer the survey. Once your survey has been submitted it can’t be withdrawn as all surveys are anonymized.

Confidentiality – who will know I am taking part in the research study?

No one will know you are taking part. The survey is completely anonymized so the researchers will not be able to identify you. Group level data from this study will be used in reports, conference abstracts and potentially a scientific publication. Your identity will not be revealed at any point.  All information you provide will be treated with strict privacy and anonymity at all times.

All information collected is strictly confidential and will be stored safely on password protected Microsoft Office system, adhering to all GDPR guidelines.

Who has approved the study?

The Research Ethics Committee at Sligo Institute of Technology has approved this study (REF ).

What will happen to the results of the research study?

Outputs from the research project will be put forward for publication (e.g., academic publications, presentations and reports). Once published it will be shared with you (all members of the society), it will be presented in any research conferences it is accepted into. No individual will be identifiable. At any stage, the researcher would be happy to discuss any questions you might have about this study.

What happens next?

Please take time to review this information, if you happy to be part of our study please give your informed consent below by accepting the terms of this study and complete the survey which will appear once you have read all the study information and provided consent to take part. Please contact the researcher (Sarah Kiernan, sarah.kiernan@coelaic.ie) if you have questions or wish to discuss further.