Health Professionals

Health Professionals FAQ

Frequently Asked Questions

With more than 11,000 participants, the FARE Patient Registry is the largest registry capturing the food allergy disease patterns of children and adults. The Registry will help researchers better understand food allergy and its impact and will also reveal opportunities to improve the care food allergy patients receive. Insights from the FARE Patient Registry are also used to support FARE's education and advocacy initiatives, serving the more than 32 million Americans with food allergy.

The FARE Patient Registry empowers individuals with food allergies, or their caregivers, to help drive food allergy research forward by encouraging them to share their unique food allergy histories with the research community. By providing detailed, real-world insight into the incidence and quality-of-life impact of food allergy, the Registry supports development of the knowledge, tools and resources needed to quickly advance clinical research and build a pipeline for new therapies.

The primary goals are to:

  • 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

Clinicians

Clinicians play an important role in Registry recruitment by helping patients understand how their choice to participate in the Registry increases the Registry’s value to research.

By participating in the FARE Patient Registry, your patients can make a difference in their own lives and in the lives of millions of individuals and families who, like them, are managing the burden of food allergies.

FARE Patient Registry participants can:

  • Contribute to the search for new treatments and support improvements in care and education when they share their food allergy histories.
  • Compare their food allergy survey responses to those contributed by other FARE Patient Registry members, reinforcing a sense of community
  • See the value of their contributions when they are informed about food allergy research findings made possible by FARE Patient Registry data
  • Use the Registry platform to organize their food allergy medical information in one place, tracking reactions and storing their food allergy medical records
  • Connect with researchers conducting personally relevant clinical trials
  • Take advantage of all of the educational resources, tools and support offered by FARE

Individuals are eligible to join if they or their child/dependent has a physician-diagnosed or well-documented history of food allergy and can provide informed medical consent. Minors are welcome to participate if they provide their assent as well as parental or guardian consent. At this time, the FARE Patient Registry is focused on participation from U.S. residents only.

Contributing to the Registry takes a small commitment of time, but making a difference is easy. The steps are:

  • Enroll in the Registry. Creating a confidential profile takes 5 minutes. Adult patients over 18 years of age and parents/guardians of food-allergic minors will be asked to read and electronically sign a consent form. In addition, food-allergic minor participants must complete an assent form agreeing to participate
  • Complete online surveys. Food-allergic individuals or caregivers share their food allergy experiences by completing short (5-10 minute) surveys on any smart device or computer.
  • Share medical records. Participants can voluntarily and securely upload physician notes and test results to provide confirmation of diagnosis. They may also submit other relevant information such as symptoms, ongoing care and oral food challenges.
  • Update reactions. Each time the participant has an allergic reaction, they/their caregiver is urged to retake the Food Allergy Reactions survey to help track reactions longitudinally.

The FARE Patient Registry is firmly committed to protecting your patients’ personal information. When your patients submit information to the FARE Patient Registry, the data is 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 the patient specifically agrees 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.

Researchers

Investigators who apply for and are granted Registry access may use de-identified data to further their research.

To gain access to the FARE Patient Registry Researcher Portal, researchers can register at http://researcher.fareregistry.org

An investigator portal is available to review aggregated de-identified data, search for cohorts of patients and save searches for future use. To gain access to the FARE Patient Registry Researcher Portal, researchers can register at foodallergypatientregistry.org/for-researcher.html. To obtain raw data for analysis or review the Registry’s survey tools, please download and complete the Researcher Portal Narrative Form, and then email it to This email address is being protected from spambots. You need JavaScript enabled to view it..

As a researcher, you can advance the knowledge base by using Registry data to analyze and expand understanding of food allergy. For investigators affiliated with the FARE Clinical Network, there is no cost to access data. Requests from other investigators are evaluated on a case-by-case basis. FARE must be notified in advance of any plans to publicly share analyses using FARE Patient Registry data. Publicly published findings must credit FARE as the source of data by listing the FARE Patient Registry, developed by FARE (Food Allergy Research & Education. In addition, all abstracts or manuscripts must be reviewed and approved by FARE at least 30 days before they are submitted for publication.

  • Food Allergy History: Collects information on patient demographics, current food allergies, recent reactions, comorbidities, diagnosis, treatments and tolerance.
  • Food Allergy Reactions: Delves deeper into a patient's food allergy reaction, exploring contemporaneous events that may have influenced the reaction, as well as reaction management and outcomes; participants are encouraged to retake this survey for each reaction to study reactions over time.
  • Mental Health Services & Concerns: Assesses interest in, and access to, mental health support services for food allergy patients and caregivers to shed light on the psychological burden of food allergy.

If you’d like further information or free informational materials you can distribute to your patients, please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it..