About the Registry
What is the FARE Patient Registry?
The Food Allergy Patient Registry is part of FARE’s strategic plan to accelerate food allergy research. The registry intends to collect de-identified information from patients to build a database of detailed medical information about people diagnosed with food allergies. The information will be used by researchers, clinicians, advocacy organizations, caregivers, pharmaceutical companies and others. It represents the culmination of combined efforts between FARE’s distinguished Clinical Advisory Board, composed of the world’s leading medical authorities on food allergy science, as well as researchers and leading doctors from around the nation.
A food allergy patient registry is a data collection tool created to help patients who are diagnosed with a food allergy better manage their condition and contribute to a national repository. FARE’s Patient Registry can also be used by patients as a personal repository. Patients can use data such as the frequency of reactions, treatments used, and the progression of the disease to track their own clinical history. This information can also be collected and shared with their healthcare providers.
The information collected on this database can connect patients to clinical trials, provide patients and families with decision-making tools, and help researchers gather data to help understand the nature of food allergy. Data from the registry will facilitate studies that will answer questions about the history of food allergies, how patients can recognize food allergy symptoms, and what is being done to diagnose and treat patients.
For this reason, it is important to create a single, comprehensive national food allergy registry that encourages collaboration between institutions and providers currently treating food allergies. The registry provides feedback that allows FARE and healthcare providers to identify areas that need improvement as well as to track patient progress and help physicians integrate patient research into their practice. In this type of registry, the patient and family members control what clinical information to share; samples and other important data are also shared.
What are the goals of the FARE Patient Registry?
FARE seeks to advance research that will deepen our scientific understanding of food allergy and lead to the development of effective diagnostic tools and treatments that protect all patients with food allergies against life-threatening reactions. For this reason, we need your help. The registry will allow researchers to have the tools they need to capture vital information.
The goal is to record critical data that measures the prevalence, demographics, management and outcomes, including clinical histories and ultimately, bio-specimens (Serum, DNA and RNA samples) of adults and children experiencing food allergy reactions. Your information will help researchers better understand how food allergies affect individual patients and what therapies we can develop to help them. In addition, we can monitor real-word outcomes related to the incidence, management, and challenges faced by the food allergy community.
The information you provide will be searchable, while protecting your identity. De-identified data (information where all personal identifiers such as name, and address, has been removed) gathered from the registry will be made available to registered researchers in the hope that analyses of a substantially larger database will support breakthroughs and clinical trials.
What is the biorepository and how can I participate?
In the future, we plan include a food allergy biorepository (DNA, RNA, biopsies, serum) as part of the registry. This will be accomplished in collaboration with participating FARE Clinical Network sites. It is crucial that researchers have the tools they need to succeed. FARE’s Patient Registry and Biorepository could dramatically accelerate discovery of serum biomarkers, genetic risk factors and environmental triggers of food allergy.
Who can join?
You are eligible to join if you or your child has been diagnosed with a food allergy, and you are able to provide informed consent.
I believe I have a food allergy. Can I join the registry?
Never diagnose a food allergy on your own. Self-diagnosis can lead to unnecessary dietary restrictions and inadequate nutrition, especially in children. Additionally, some people think they are allergic to a food when they actually have another type of food disorder such as a food intolerance. We encourage all participants to confirm the diagnosis of your food allergy with a qualified healthcare provider, preferably an allergist, before joining.
I have been diagnosed with a food intolerance or food sensitivity. Can I Join?
Only your doctor can determine if you have a food intolerance or a food allergy. At this time, we are asking for patients with confirmed food allergies to participate.
Why should I join?
By participating in FARE’s Patient Registry, you can make a difference in the lives of millions of individuals with food allergies and their families. There are exciting studies in development at major medical centers nationwide. Reasons to participate include:
- The opportunity to contribute directly to the search for new treatments and a cure
- The possibility of benefiting from a promising new treatment before it is widely available
- Access to medical care from a team of experts in the field
- Allowing investigators at institutions nationwide to connect with you to participate in food allergy clinical trials
- Use the registry as a personal repository to track your food allergy reactions
What does participating in FARE’s Patient Registry involve?
Participating in the registry is simple and free. After joining FARE’s Patient Registry, you will be asked to complete an initial survey that details your experiences as a food allergy patient. You also have the opportunity to share medical records that describe your diagnosis, treatments, symptoms and developments in the course of the disease. Your input will also support development of patient and caregiver educational material. We may periodically send you additional survey questions and request that you update your information, so what we can gain insights to your specific areas of interest. In the future, we will provide you the option to report food allergy reactions after they happen to collect real-time information.
Who has access to FARE’s Patient Registry?
Access to personal information will be limited to FARE’s Patient Registry staff. Initially, members of FARE’s Clinical Network Sites (FCN) will have access. This information may be shared with the broader medical community, including researchers, clinicians, pharmaceutical companies and advocacy organizations who engage in research in partnership with a FARE Clinical Network site.
This collaboration among the nation’s top research and clinical care centers is what sets FARE’s Patient Registry apart. In 2015, FARE invested in the FARE Clinical Network – and now funds 27 sites across the country – for the dual purpose of elevating the level of patient care and accelerating research to improve the lives of millions affected by food allergies. In creating the FARE Clinical Network FARE identified the need to develop a robust food allergy patient registry and leverage Network sites to contribute to it as well as a biorepository.
All information in the registry is de-identified, meaning any information that could be used to personally identify you has been removed. No identifiable information will be shared with other users without your expressed permission. As a participant, you have immediate access to the pool of de-identified survey answers and other educational tools.
Who can I contact if I have questions about FARE’s Patient 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 difficulty enrolling.
Will my information be kept confidential?
FARE’s Patient Registry is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. When you submit information to the Food Allergy Patient Registry, it will be stored and maintained in a secure, password-protected database to maintain the privacy, security and confidentiality of all personal information as described in our Privacy Policy. Third parties will not be given access to any identifiable patient information, unless you specifically agree to be contacted by them. The registry meets HIPAA, FISMA and data and patient protection laws.
Can I withdraw from the registry if I change my mind?
Your voluntary participation places you under no obligation. You own your data and can withdraw from the registry at any time. You may do so 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.
Who is the sponsor of the FARE Patient Registry?
Food Allergy Research & Education (FARE), the nation’s leading non-profit organization working on behalf of the 15 million Americans with food allergies.
What company created the FARE Patient Registry?
Invitae is a leader in building web-based patient registries designed to advance research and connect patients with researchers, physicians, patient advocacy groups and industry organizations working to understand or treat specific diseases and conditions. Invitae amplifies the voice of patients to help drug developers find better treatments for diseases. We deliver patient insights faster, and for far less, than traditional registries and CRO organizations.
Can I use my mobile device to register for the FARE Patient Registry?
Yes, you can join and complete the surveys from any location on your smart phone, tablet or computer.
