FARE Patient Registry FAQ

About the Registry

 

Patient registries allow patients and caregivers to quickly, conveniently and privately share their unique disease experiences in order to help researchers better understand that disease, find hidden patterns that lead to breakthroughs, and develop new disease treatments and, ultimately, a cure. Created for individuals and families managing food allergies, the FARE Patient Registry works the same way.

The FARE Patient Registry is a vital tool that harnesses the power of patient experience and medical data to help researchers tackle questions about food allergies in order to speed the search for new treatments and inform life-changing improvements in patient care.

Launched in May 2017, 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 deepen their understanding of the everyday burden caused by food allergy, improve patient care and education, and lead the way for the discovery of better treatments and a cure.

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

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. 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. Reasons to participate include:

  • The opportunity to contribute directly to the search for new treatments and a cure
  • The experience of being part of a powerful community helping to inform groundbreaking research
  • The possibility of being connected with investigators at institutions nationwide to participate in food allergy clinical trials
  • The ability to use the FARE Patient Registry for family food allergy medical record-keeping, helping to organize food allergy medical information and track food allergy reactions

Participating in the Patient Registry takes a small commitment of time, but making a difference is free and simple.

  • Enroll in the Registry. Creating a confidential profile takes 5-10 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) form agreeing to participate.
  • Complete online surveys. Tell us about your personal experiences as a food allergy patient or caregiver by taking surveys that may be completed in 5-10 minutes, on any smart device.
  • Share medical records. Participants can 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.
  • Keep in touch. We'll notify you when new surveys are added and share updates about research progress.

Access to personal information will be limited to the FARE Patient Registry team. Your de-identified 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.

The FARE Patient Registry is firmly committed to maintaining the confidentiality of 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, unless you specifically agree to be contacted by them. 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.

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.

Your voluntary participation in the Registry means you can remain a member for as long as you choose. You own your data and can withdraw from the Registry at any time by contacting 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.

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

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.