Advancing a Cure

FARE Patient Registry

Take part in life-changing research

“Food allergies are a life-threatening medical condition for which we have no FDA-approved therapies. The lack of accurate, large scale data for patients with food allergies is a problem that we aim to solve with FARE’s Patient Registry, a valuable new tool that will help us advance research on several fronts to develop and test new treatments and improve patient care. The 15-20 minutes that it takes for each individual to participate has the potential to make a big impact.” James R. Baker, Jr., M.D., CEO and chief medical officer of FARE.

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FARE’s Patient Registry is a patient-powered registry created for individuals and families managing food allergies. This vital tool will harness the power of patient data to accelerate research toward revealing the causes of food allergy, uncovering why food allergy rates have increased in recent years and identifying which treatments might be most effective for individual food allergy patients.

The registry will serve as a data bank to collect demographic and clinical information on all patients, including clinical histories, lab reports and eventually bio-specimens (serum, DNA and RNA) and make this information available to the greater medical community. Demographic information can better define the real-world food allergy population and enhance the understanding of the natural course of the disease. This knowledge can be used to develop evidence-based guidelines for diagnosing and monitoring patients.

Patient data is critical for the development and approval of new treatments.

Using real-world experiences to accelerate research

The domain of food allergy research has many unanswered questions and your health information will help us get the answers. FARE will use the anonymous data to organize and analyze participant’s real-world experiences to prioritize and answer the important research questions. A patient registry is the single most important development our community can do that will further our understanding of food allergy and lead the way for the discovery of novel treatments and a potential cure.

Our Goals

  • Advance the scientific understanding of food allergies
  • Create a personal repository of patient data to study how accidental exposures and reactions occur
  • Examine and standardize care for those living with food allergies
  • Develop better ways to diagnose food allergy
  • Improve and develop guideline-recommended treatments for food allergies
  • Promote awareness and understanding of food allergies
  • Understand the causes of food allergy (including anaphylaxis) and find new ways to prevent it

Some topics we are investigating:

  • Improving food labeling
  • Treatment of food-induced anaphylaxis
  • Treatments that lessen the severity or cure food allergy
  • Factors that help patients better manage their food allergy
  • Genetic screening to define risk of food allergy
  • Diagnostic testing, predictors and biomarkers for food allergy and anaphylaxis
  • How genetics and the environment contribute to the development of food allergy
  • Psychosocial impact and mental/behavioral health
  • Developing best practices guidelines for assessing and treating psychosocial disorders

FARE Has the Network

Collecting clinical data from patients with food allergies can transform food allergy research because this has not been done before. With this goal in mind, we created the FARE Clinical Network. This collaboration among the nation’s top research and clinical care centers is what sets FARE’s Patient Registry apart from all other registries. 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. FCN members have agreed to provide data to the FARE Patient Registry and we plan to mine this data to build a robust and comprehensive patient database.

You Can Help Us Advance Food Allergy Science

When you register, you will be asked questions about your or your children’s personal experiences as a food allergy patient. This information will be used to learn how food allergies affect individuals and families and encourage the creation of clinical trials with the goal to get us all closer to new treatments.

We are looking for individuals over 18, including family members of children with diagnosed food allergies. Signing up to the FARE Patient Registry is an important step that will provide critically important data to assist research in a number of ways and help individuals track their own disease. The registry will empower patients through a personalized patient portal, to share health information and make contributions that connects patients, clinicians, researchers, biopharma therapeutics developers and advocacy organizations.

Here is how you can contribute

Joining the registry takes commitment but making a difference is simple and easy. How will you contribute?

Consent.
Patients will be asked to read and sign a consent or assent form to agree to your participation.
Answer surveys. As a participant, you will answer questions about your personal experiences as a food allergy patient from your computer or smart phone. We promise you won’t have to be active all the time.
Share medical records. Participants can upload physician notes and test results to provide information about confirmation of diagnosis
Tell us when you have a reaction. It’s critical for researchers to know why you have an accidental exposure and when you visit the ER for treatment.
Participate in clinical studies. The only way to develop new therapeutics is to learn what works for patients like you
Stay in touch. We hope you participate in the registry for many years and enjoy the benefits sharing data can bring. It is the only way we will know who gets better and why. 15-20 minutes every 4 months is your commitment and can be done slowly over time

How will I learn about clinical trials?

The FARE Patient Registry will also serve as a recruitment database that can be used to address the difficulty in enrolling patient into clinical trials and connect you with leading researchers and scientists.

The process of recruiting patients is challenging and can often take a long period of time. If researchers cannot find enough patients to join a study, this can often delay discoveries that can benefit the food allergy community at large.  Your participation in this registry and potentially, clinical trials, could help the community accelerate that process considerably.  Researchers will never contact you directly. The FARE registry coordinator will contact you with information about a study or clinical trial by email.

Take ownership of your health information

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Your Data is Safe with Us

Your data is stored and maintained in a secure, password-protected database ensuring the privacy, security and confidentiality of all personal information. Third parties will not be given access to any identifiable patient information, unless you specifically agree to be contacted by them. Visit FARE’s privacy policy to learn more.