FAQs About Data Collection

1. How much time will it take to complete the survey?

Depending on how you respond to the branching questions, completing iCureCeliac® in its entirety will take approximately 45 minutes. You may, however, complete the survey in sections over time by saving your responses and logging out, then logging back in when you’re ready to continue. If you would like to continue, we also encourage you to complete the Follow-Up Survey upon completion of the Welcome Survey.

2. Am I able to save my responses, log out, and finish the survey at another time?

Yes, you may save your responses, log out, and then log back in when you’re ready to continue the survey.

3. How often should I update my information in iCureCeliac®?

We encourage you to update your information in iCureCeliac® approximately every six months. Every so often, we may notify you of additional surveys that have been added to iCureCeliac® for you to complete.

4. What kinds of information will I be asked to contribute to iCureCeliac®?

You will be asked questions about your medical history, symptoms, diagnosis, and potential treatments. Your general health, reproductive health, dietary adherence, disease concerns, family history, and demographic information will also be queried.

5. What makes iCureCeliac® different from other celiac disease and non-celiac gluten/wheat sensitivity data collection programs?

Launched in March 2016, iCureCeliac® is the only public patient registry in the U.S. for celiac disease and non-celiac gluten/wheat sensitivity. iCureCeliac® is an initiative of the Community Engaged Network for All (CENA), a Patient-Centered Outcomes Research Institute (PCORI)-funded project, led by the Genetic Alliance, of which Celiac Disease Foundation (CDF) is a member. iCureCeliac® was developed in collaboration with the University of California, San Francisco (UCSF), the University of California, Davis (UCD), the University of California, Los Angeles (UCLA), the CDF Medical Advisory Board and scientific and medical communities, Private Access, and several other disease advocacy organizations that were selected by Genetic Alliance from more than 100 applicants.

6. Will I know how my data is being used by researchers?

Your anonymized information will be pooled with data from thousands of other people with celiac disease or non-celiac gluten/wheat sensitivity. The pooled information is used by researchers to identify patterns that would not otherwise be visible, and to gain insights into the causes, mechanisms, and implications of the disease.

iCureCeliac® will provide updates about the research studies and clinical trials as they progress.

7. How often will I receive updates from iCureCeliac®?

You will receive updates from us periodically, for example, when there is a new survey, important news, and/or research findings. You will also receive exclusive opportunities to participate in clinical trials and focus groups that may offer payment or other incentives for your participation.