FAQs About Celiac Disease Research and the Potential of Health Data

1. What will iCureCeliac® help to accomplish?

Your participation in iCureCeliac® will help discover new ways to improve patient lives through better diagnostic tools, treatments for cross-contact and gluten consumption, governmental policy changes, and access to new and innovative clinical trials nationwide which may one day cure celiac disease and non-celiac gluten/wheat sensitivity.

2. How many people with celiac disease do you need in iCureCeliac®?

Researchers and the biopharmaceutical industry have informed us that we need 10,000 participants in iCureCeliac® in order to maximize its potential.

3. What kinds of questions will iCureCeliac® help answer?

There are an infinite number of questions that may be answered using the data gathered through iCureCeliac®. Some of these questions include:

  1. What causes celiac disease and non-celiac gluten/wheat sensitivity?
  2. What causes the celiac disease gene to turn on in some and not others?
  3. What causes symptoms to be more severe in some and not others?
  4. How can we develop better treatments for celiac disease and non-celiac gluten/wheat sensitivity?

4. Why should I participate in iCureCeliac®?

By adding your data to iCureCeliac® you are helping to advance life-changing initiatives in research, education, and advocacy. By aggregating large amounts of data from thousands of patients living with celiac disease and non-celiac gluten/wheat sensitivity, we are able to analyze disease patterns and help answer questions most important to patients. iCureCeliac® is our best path to a cure for celiac disease and non-celiac gluten/wheat sensitivity because it offers a large-scale approach to researching complex disease patterns.

5. How does iCureCeliac® work?

Your health information is incredibly valuable. By aggregating large amounts of data from thousands of patients living with celiac disease and non-celiac gluten/wheat sensitivity, we are able to analyze disease patterns and help answer questions most important to patients. Your data can shape the types of research studies to be conducted that are most beneficial to you – the patient.

6. How can I participate in clinical trials and research studies?

Based on the information you submit to iCureCeliac® and your privacy settings, as well as the eligibility criteria set forth by researchers and biopharmaceutical companies, Celiac Disease Foundation (CDF) will notify you of existing opportunities to participate in clinical trials or research studies. Researchers and biopharmaceutical company representatives will never contact you directly; if you choose to participate in the opportunity, you would contact the researcher or biopharmaceutical company representative yourself.