Celiac Disease Research and the Potential of Health Data

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.

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.

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?
  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?

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, 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 because it offers a large-scale approach to researching complex disease patterns.

How does iCureCeliac® work?

Your health information is incredibly valuable. By aggregating large amounts of data from thousands of patients living with celiac disease, 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.

How can I participate in clinical trials and research studies?

Based on the information you submit to iCureCeliac®, as well as the eligibility criteria set forth by researchers and biopharmaceutical companies, Celiac Disease Foundation 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.

Data Collection

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.

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.

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.

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.

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. 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 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 Foundation 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.

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. 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.

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.

Your Involvement

Can my relatives with celiac disease add their data to iCureCeliac®?

Absolutely! If you have a child or relative under the age of 18, we ask that you complete iCureCeliac® on their behalf.

What am I committing to by joining iCureCeliac®?

Upon joining iCureCeliac®, we ask that you share accurate and honest health information to the best of your knowledge, and that you continue to share your information as new surveys are added. You are able to withdraw your participation at any time.

How can I suggest improvements to or offer feedback on iCureCeliac®?

Please feel free to send your comments to iCureCeliac@celiac.org.

How can my healthcare provider participate in iCureCeliac®?

Your provider can order iCureCeliac® postcards through the Celiac Disease Foundation Waiting Room Program to display in his/her office that educate patients about iCureCeliac®.

Funding and Support

Who created the iCureCeliac® initiative?

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 the Celiac Disease Foundation 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 Celiac Disease Foundation Medical Advisory Board and scientific and medical communities, and several other disease advocacy organizations that were selected by Genetic Alliance from more than 100 applicants.

How is iCureCeliac® funded?

The initial funding for iCureCeliac® was provided by the Patient-Centered Outcomes Research (PCORI), a non-governmental institute created as part of a modification to the Social Security Act by clauses in the Patient Protection and Affordable Care Act of 2010. Currently, iCureCeliac® is maintained through individual donations.

What other organizations support iCureCeliac®?

iCureCeliac® is supported by the Gluten Intolerance Group and 45+ other disease advocacy organizations that belong to the Platform for Engaging Everyone Responsibly (PEER).

Privacy and Security

How does iCureCeliac® protect my privacy?

iCureCeliac® takes your privacy and security very seriously. You have control of your health information. You control who views it, what information you’d like to share, and which research studies you’re willing to participate in. Ensuring that your health information remains secure is our utmost priority. Additionally, your health information is anonymized for researchers so they do not have access to your contact information.

Will iCureCeliac® share my health information?

You have control over who accesses your health information; these are settings that you select upon creating your profile in iCureCeliac®. However, your health information is only valuable to iCureCeliac® if you allow researchers and the medical and biopharmaceutical industries to access it and use it for research.

So we encourage you to allow complete access to your health information knowing that your contact information will not be shared with researchers, and that both your contact and health information will not be shared with the general public.

Your health information is providing the critical information we need to advance research toward treatments and a cure for celiac disease.

Will researchers ever contact me directly?

Researchers will never contact you directly. Celiac Disease Foundation will inform you of any opportunities to participate in clinical trials or research studies, and you will be able to follow-up with the researcher directly.