Frequently Asked Questions
iQualifyCeliac vs. iCureCeliac®
What is the difference between iQualifyCeliac and iCureCeliac®?
iCureCeliac® patient registry is an online patient-powered research network that gives patients and caregivers the opportunity to fill out surveys about their health to advance celiac disease research.
iQualifyCeliac is an online screening tool that allows patients to find out if they qualify to participate in an open clinical trial or study.
Do I need to register separately for iQualifyCeliac and iCureCeliac®, or does signing up for one sign me up for the other?
Technical Difficulties in iCureCeliac® or iQualifyCeliac
I have forgotten my username and/or password
Both iCureCeliac® and iQualifyCeliac have “Forgot password?” links that will allow you to reset your password using your email address or username. If you have also forgotten the username or email account you used to register, please email firstname.lastname@example.org so we may assist you. Keep in mind that iCureCeliac® and iQualifyCeliac are two separate pages with different logins, so make sure you are using the right one.
The survey I’m taking is responding slowly or freezing
Sometimes the system takes a few moments to register your answers. If it seems much slower than normal, try using a different device (if you are on your phone or tablet, try moving to a computer) and a different web browser (we recommend Google Chrome). General troubleshooting tips, including turning your device off and back on, checking your internet connectivity, and closing out of the window and clearing your browser’s cache (found in history) and restarting the browser may also help. Note that if you do this, any survey answers that have not been saved will have to be re-answered and submitted again.
I pressed “Submit Survey” once I was done, but I never got a confirmation page.
iQualifyCeliac: After you complete a survey, you should see a page saying “Thank you for submitting your survey. Please check your email to see if you may qualify for this study.” If you did not see this page, check your email. If you received an email saying whether or not you qualified for the study, this means the survey still went through – even if you did not receive a confirmation page. If you did not receive this email, and you checked your junk/spam folder, email email@example.com for assistance.
iCureCeliac®: After you complete a survey, you should see a page that says “You have completed the survey. Please click on the Submit Survey button.” If you do not click “Submit Survey,” your survey will not be submitted. Once you have submitted your survey, you will be directed back to the main page that shows all of your surveys. There should be a blue “Completed” button next to the survey and the progress should be at 100%. You will now be able to move on to the next survey.
The page won’t let me create an account because it says there is already an account with that username or email.
You may have already registered and forgotten about it. If you do not remember signing up, but the system says your email is registered, click on the “forgot password?” link to reset your password. If this doesn’t work, email firstname.lastname@example.org.
I submitted a survey in iQualifyCeliac but then I got an email saying I didn’t qualify, why is this?
The criteria for each study is different and may be based on factors out of your control (example: current location). Please keep in mind that registering for iQualifyCeliac is not a guarantee of study or trial participation. If you are not a candidate for participating, or the study is at capacity, you may still be eligible to participate in future studies. To be notified of new study opportunities, subscribe to our email list. You can also use our Clinical Trial Finder at any time to search for other trials near you.
I never got a confirmation email with a link to complete the registration process for iCureCeliac®
If you did not receive a confirmation email allowing you to register for some reason, please email email@example.com.
After answering a question, I clicked previous to change my answer on the previous question. Why wasn’t my answer saved?
Answers are only saved once you click “Save and Continue.” If you leave the page before clicking “Save and Continue,” your answer on this page will not be saved and you will have to answer the question again.
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 a number of questions that may be answered using the data gathered through iCureCeliac®. Some of these questions include:
- What causes celiac disease?
- What causes the celiac disease gene to turn on in some and not others?
- What causes symptoms to be more severe in some and not others?
- 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 unless you authorize them to; for most opportunities you will contact the researcher or biopharmaceutical company representative yourself.
How much time will it take to complete the survey?
iCureCeliac® has a number of surveys important to researchers. Each survey may be completed in 10 minutes or less. You may complete as many surveys (or as few) as you would like, and log back in at a later time to complete more. If you want to answer them all at once, you should expect to spend at least 45 minutes.
Am I able to save my responses, log out, and finish a survey at another time?
Yes, you may save your responses, log out, and then log back in when you’re ready to continue a survey.
How often should I update my information in iCureCeliac®?
We will send you an email reminder to update your answers approximately every six months after you complete or update a survey. 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. Questions about your general health, reproductive health, dietary adherence, disease concerns, family history, and demographic information will also be asked.
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 United States for celiac disease. iCureCeliac® launched as a Patient-Centered Outcomes Research Institute (PCORI)-funded project.
iCureCeliac® was developed in collaboration with the University of Southern California (USC), the Celiac Disease Foundation Medical Advisory Board, and other members of the celiac disease scientific and medical communities.
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.
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® brochures 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?
Launched as a Patient-Centered Outcomes Research Institute (PCORI)-funded project, iCureCeliac® was developed in collaboration with the the University of Southern California (USC), the Celiac Disease Foundation Medical Advisory Board, and other members of the celiac disease scientific and medical communities.
How is iCureCeliac® funded?
The initial funding for iCureCeliac® was provided by the Patient-Centered Outcomes Research (PCORI), an independent, non-profit, nongovernmental organization authorized by the Patient Protection and Affordable Care Act (PPACA) of 2010. Currently, iCureCeliac® is maintained through individual donations.
Privacy and Security
How does iCureCeliac® protect my privacy?
iCureCeliac® takes your privacy and security very seriously and has policies and processes in place to safeguard your identity and protect your health data. Only authorized personnel have access to your contact information, and this information is never attached to the health information that we share with researchers. iCureCeliac® is built using all industry-standard physical and electronic technical precautions to protect your information.
Will iCureCeliac® share my health information?
Your health information is anonymized for researchers, which means they do not have access to your contact information. Neither your contact information nor your health information will not be shared with the general public.
Will researchers ever contact me directly?
Researchers will never contact you directly. The 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, or authorize them to contact you.