FARE Patient Registry®

The FARE 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 in order to help advance food allergy research. The Registry helps researchers better understand food allergy and its impact and reveals opportunities to improve the care food allergy patients receive, including speeding the search for new ways to diagnose, treat, and ultimately, cure food allergies. 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 potentially life-threatening food allergies.

Launched in May 2017 by FARE (Food Allergy Research & Education), 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 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. 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 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 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 14,000 individuals helping to inform groundbreaking research

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.
• 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.