Privacy Policy

Celiac Disease Foundation (“CDF”, “we,” “our,” or “us”) is strongly committed to protecting and respecting your privacy rights. This privacy policy (the “Privacy Policy”) relates to the information collection and use practices of CDF in connection with the Proactive Celiac Study pre-screening survey (“Proactive Celiac Study Survey”) that is made available to you through our websites located at and (each, a “Website,” and collectively, the “Websites”).

Proactive Celiac Study is a research study sponsored by Provention Bio, Inc. (“Provention”). CDF is administering the Proactive Celiac Study Survey on behalf of Provention pursuant to a Clinical Trial Agreement between Provention and CDF (“Clinical Trial Agreement”).

This Privacy Policy only applies to the Websites, and the Proactive Celiac Study Survey conducted by and forms created by CDF on behalf of Provention that include a link to this Privacy Policy. It does not apply, to any other CDF sites, products or services, or to any Provention sites, products or services.

By accessing and using any of the Websites, you acknowledge that you have read, understood, and agree to be legally bound by this Privacy Policy and the accompanying Terms of Use.

Information We Collect and/or Receive

In the course of administering the Proactive Celiac Study Survey, we will collect and/or receive the following types of information:

  1. Contact Information In order to determine whether you are eligible to participate in the Proactive Celiac Study, you will have to register on During the registration process, you will be asked to provide information such as your name, address, email address, and phone number (collectively, the “Contact Information”). You may opt-in to be contacted by CDF via phone or email to refer you to a study site. You may opt-out of being contacted by CDF at any time by emailing us at Should you choose to opt-out, you will no longer be eligible to participate in the Proactive Celiac Study. Once registered, you will need to carefully review and accept the informed consent policy to determine your eligibility to enroll in the study.
  1. Survey Information When you complete the Proactive Celiac Study Survey, we collect your answers to the questions in the survey.
  1. Other Information In addition to the Contact Information, and the Survey Information, we may collect or receive the following information (collectively, the “Other Information”):
  • From Cookies.We also collect information by using “cookie” technology. Cookies are small packets of data that a website stores on the hard drive of your computer or mobile device to “remember” information about your visit. We may use session cookies (which expire once you close your web browser). If you do not want us to place a cookie on your hard drive, you may be able to turn that feature off on your computer or mobile device. Please consult your Internet browser’s documentation for information on how to do this and how to delete persistent cookies. However, if you decide not to accept cookies from us, the Websites may not function properly and you may not be able to participate in the Proactive Celiac Study Survey.

How We Use and Share the Information

You authorize us to use the Contact Information, the Survey Information, and the Other Information (collectively, the “Information”) to provide you the Websites; respond to your enquiry; solicit your feedback; administer the Proactive Celiac Study Survey; and send you periodic messages about your eligibility to enroll in the Proactive Celiac Study.

You also authorize us to use and/or share the Information as described below.

  • We may engage other companies and individuals to perform certain business-related functions on our behalf. Examples may include providing technical assistance.  These other companies will have access to the Information only as necessary to perform their functions and to the extent permitted by law. We may also share your Information with any of our parent companies, subsidiaries, or other companies under common control with us.
  • We may disclose your personal information to third parties in aggregate form, that is, in a manner that cannot be traced back to you. In these cases, information is only provided after personally identifiable information such as name, address, telephone number, or email address has been removed.
  • We will not share, sell and/or disclose your Information to Provention. However, we may share and/or disclose your Information to third-parties who are authorized by Provention to receive your Information such as Provention’s third-party partners who are involved in the Proactive Celiac Study and the sites conducting the Proactive Celiac Study.
  • As we develop our businesses, we might sell or buy businesses or assets. In the event of a corporate sale, merger, reorganization, sale of assets, dissolution, or similar event, the Information may be part of the transferred assets.
  • To the extent permitted by law, we may also disclose the Information: (i) when required by law, court order, or other government or law enforcement authority or regulatory agency; or (ii) whenever we believe that disclosing such Information is necessary, to protect the rights, property, or safety of CDF or others.


We are committed to protecting the privacy of children. You should be aware that these Websites are not intended or designed to attract children under the age of 13. We do not knowingly collect personal information from children under the age of 13 through the Websites. If you are under the age of 13, please do not provide any information through the Websites. We encourage parents and legal guardians to monitor their children’s Internet usage and to help enforce this Privacy Policy by instructing their children to never provide any information on these Websites, or any other web site without their permission. If you have reason to believe that a child under the age of 13 has provided information to CDF through the Websites, please contact us at and we will endeavor to delete that information from our databases.

Data Security & Data Retention

We have in place physical and electronic security procedures to protect the Information from loss, misuse and unauthorized access, disclosure, alteration, or destruction. Please understand, however, that no security system is impenetrable.  We cannot guarantee the security of our database, nor can we guarantee that the information you supply will not be intercepted while being transmitted to us over the Internet. We will retain your personal information for a reasonable period of time as long as the purpose exists for which the personal information has been collected or longer if required by applicable law.

Links to Third Party Sites

The Websites may, from time to time, contain links to external websites. CDF encourages you to review the privacy and security policies of any externally linked websites that may be accessed through the Websites. CDF assumes no responsibility or liability for the information, collection and disclosure practices of any external websites that a user can access through the Websites. Please check the privacy policies of these external websites before you submit any personal information to them.

Accessing and Modifying Personal Information and Communication Preferences

You may access, review, and make changes to your personal information by emailing us at  In addition, you may manage your receipt of marketing and non-transactional communications by clicking on the “unsubscribe” link located on the bottom of any CDF marketing email.  Should you choose to opt-out of receiving period emails about your eligibility to enroll in the Proactive Celiac Study, you will no longer be eligible to participate in the Proactive Celiac Study. We will use commercially reasonable efforts to process such requests in a timely manner.  You should be aware, however, that it is not always possible to completely remove or modify information in our subscription databases.

Important Notice to Non-U.S. Residents

The Websites, and their servers are located and operated in the United States. We do not solicit or knowingly collect personal data from individuals in the European Economic Area (EEA), United Kingdom or Switzerland. Individuals in the EEA, United Kingdom and Switzerland who contact us and send us Information voluntarily are advised that the protection of their personal data may be different from data protection in the countries where they reside. They are also advised to consider before they voluntarily send personal data to us that there might not be an independent data protection authority and/or safeguards of the data processing principles and/or safeguards of data subject rights as set forth under the GDPR in the United States, unless such rights are explicitly mentioned in this Privacy Policy. If you are located outside the United States and choose to use the Websites, you do so at your own risk.

Important Notice to California Residents

California requires operators of websites or similar services to make certain disclosures to users who reside in California regarding their rights under California’s Shine the Light law. California law requires that we disclose to users how we treat do-not-track requests.CDF does not monitor, recognize or honor any opt-out or do not track mechanisms including general web browser, “Do Not Track” settings and/or signals.

Privacy Policy Changes

This Privacy Policy is effective as of the date stated at the top of this Privacy Policy. Our Privacy Policy is subject to change from time to time. Any changes to this Privacy Policy will be posted on the Websites as soon as they go into effect. By accessing any of the Websites after we make any such changes to this Privacy Policy, you are deemed to have accepted such changes. Please refer back to this Privacy Policy on a regular basis.

Thank you for taking the time to review our Privacy Policy. If you have any questions about our Privacy Policy, or your dealings with these Websites, you can contact us at