FARE Patient Registry FAQ

The FARE Patient Registry is a secure database of health information that allows adults with food allergies and parents/guardians of children or dependents with food allergy to share their food allergy experiences with the research community by taking online surveys. Launched in May 2017 by FARE (Food Allergy Research & Education), the Registry encourages leading food allergy research institutions, clinicians, pharmaceutical companies, and others to work together on behalf of more than 32 million Americans with potentially life-threatening food allergies.

By gathering and organizing knowledge reported by patients, the FARE Patient Registry:

• helps researchers better understand food allergy and its impact
• speeds the search for new ways to diagnose, treat and ultimately cure food allergies
• reveals opportunities to improve food allergy patient care
• supports FARE's education and advocacy initiatives that serve the food allergy community

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 database, assuring the privacy, security and confidentiality of all personal information. 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. The Registry complies with 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. Data in the Registry is de-identified* before it may be shared with the FARE Clinical Network and the broader community engaged in food allergy research, including clinicians, pharmaceutical companies and advocacy organizations. Any sharing of de-identified data with the research community must be approved by the FARE Patient Registry team. Your information will never be sold.

*De-identification is a process used to prevent someone's personal identity from being revealed

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 farepatientregistry@foodallergy.org, 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 to:

• help move research closer to the discovery of new treatments and a cure
• tell us your priorities to help improve patient care and quality of life for those with food allergies
• learn about possible opportunities to connect with researchers at institutions nationwide to participate in food allergy clinical trials
• experience being part of a powerful community of 14,000 individuals who are helping to shape research breakthroughs

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. During enrollment, you will be asked to read and electronically sign a consent form to participate if you are a food-allergic adult 18 years of age or older, or the parent/guardian of a food-allergic minor. If you are a food-allergic individual under 18 years of age you will be asked to sign an assent form.
• 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.
• 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.

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

Did we miss a question? Let us know! Please email farepatientregistry@foodallergy.org if you have other questions about the Registry or if you have any difficulty enrolling.