About

Registry FAQ

Frequently Asked Questions

 

The FARE (Food Allergy Research & Education) Patient Registry is a secure database of health information that allows food-allergic individuals and their caregivers to quickly, conveniently and privately share their food allergy experiences through simple online surveys to advance food allergy research. The Registry helps researchers better understand food allergy and its impact, reveals opportunities to improve the care food allergy patients receive, and powers the search for new ways to diagnose, treat and, ultimately, cure this life-changing disease. Insights from the Registry are also used to support FARE’s education and advocacy initiatives, serving more than 32 million Americans with potentially life-threatening food allergies.

Launched in May 2017 by FARE, the FARE Patient Registry reflects the combined efforts of FARE’s team of leading medical authorities on food allergy science as well as researchers and doctors from around the nation. Today, the FARE Patient Registry encourages collaboration between leading food allergy research institutions, clinicians, pharmaceutical companies, and others seeking to improve the lives of the 32 million Americans with food allergies.

The FARE Patient Registry is firmly committed to protecting your personal information. When you submit information to the FARE Patient Registry, it will be stored and maintained in a secure, password-protected database, assuring the privacy, security and confidentiality of all personal information, as described in our Privacy Policy. Third parties will not be given access to any personally identifiable information. Participation is fully voluntary, meaning that you provide only the information you are comfortable sharing and may discontinue participation at any time. Providing relevant medical records is not required for participation, however it is very helpful for researchers to analyze your survey responses in conjunction with your medical records. The Registry complies with the Health Insurance Portability and Accountability Act (HIPAA), the Federal Information Security Management Act (FISMA), data and patient protection laws, and Institutional Review Board (IRB) standards.

The primary goals are:

  • Advance the scientific understanding of food allergies
  • Develop better ways to diagnose food allergy
  • Examine, improve and standardize care for those living with food allergies
  • Improve existing evidence-based therapies and develop new treatment advances
  • Study patterns in accidental exposures and reactions
  • Promote knowledge and awareness of food allergies
  • Shed light on the causes of food allergy and food-induced anaphylaxis and find new ways to prevent them
  • Understand the psychosocial impact of food allergy

Access to your personal information will be limited to those on the FARE Patient Registry team and your doctor, if you choose to provide that information. Your de-identified (a process used to prevent someone's personal identity from being revealed) data may also be shared with the FARE Clinical Network and broader medical community engaged in food allergy research including clinicians, pharmaceutical companies and advocacy organizations as approved by the FARE Patient Registry team.Your information will never be sold.

Your participation in the Registry is voluntary which means you can remain a member for as long as you choose and withdraw at any time. To withdraw, contact the FARE Patient Registry Coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it., and your profile will be removed.

You are eligible to join the Registry if you or your child/dependent has a physician-diagnosed or well-documented history of food allergy and can provide informed medical consent (permission). If you are under 18 years of age, you are welcome to participate, but you will need a parent or guardian to provide consent.

At this time, the FARE Patient Registry is focused on participation from U.S. residents only.

By participating in the FARE Patient Registry, you can make a difference in the lives of millions of individuals and families managing food allergies. You may wish to join for:

  • The opportunity to help advance research and speed the discovery of new treatments and a cure
  • The potential to contribute to research that seeks to improve patient care and quality of life for those managing food allergies
  • The possibility of being connected with researchers at institutions nationwide to participate in food allergy clinical trials
  • The experience of being part of a powerful community of more than 11,000 individuals helping to inform groundbreaking research
  • The ability to use the FARE Patient Registry for medical record-keeping, helping to organize your family’s food allergy medical information and track food allergy reactions

Participating in the Patient Registry and making a difference is easy, quick and secure.

  • Enroll in the Registry. Creating a confidential profile takes 5 minutes. When you register, you will be asked to read and electronically sign a consent (food allergy patient over 18 years of age or the parent/guardian of a food-allergic minor) or assent (food-allergic participant under 18 years of age) form agreeing to participate.
  • Complete online surveys. Tell us about your personal experiences as a food allergy patient or caregiver by taking short (5-10 minute) surveys on any smart device.
  • Share medical records. Participants may choose to upload physician notes and test results to provide confirmation of diagnosis. You can also submit other relevant information such as symptoms, ongoing care and oral food challenges.
  • Update reactions. Each time you or your child has an allergic reaction, please log that experience by retaking the Food Allergy Reactions survey. Researchers gather valuable insights from each reaction.
  • Keep in touch. We’ll notify you when new surveys are added and share updates about research progress.

After completing activities for the first participant, navigate to your dashboard, look for the Family Member box and click “add”. Follow the instructions given. There is no limit to the number of family members you may add as long as they each have a diagnosed food allergy.

The Registry is an initiative of FARE (Food Allergy Research & Education), the nation's leading non-profit organization working on behalf of the 32 million Americans with potentially life-threatening food allergies.

The FARE Patient Registry is sponsored by DBV Technologies and Genentech. Sponsors share our interest in advancing food allergy research and generously provide funding to support the Registry. Sponsors are not involved in Registry operations or decision making. If FARE authorizes, industry sponsors may analyze de-identified Registry data. Only the FARE Patient Registry team members, including study investigators, study staff and study doctors, may access and use the health data, including identifiable data that you provide to the Registry.

Did we miss a question? Let us know! Please email This email address is being protected from spambots. You need JavaScript enabled to view it. if you have other questions about the Registry or if you have any difficulty enrolling.