FPIES and Research

FPIES can be a complex and often confounding condition. Practitioners and families alike stress frustration over a deficit of understanding for this condition. This is where research can help! When we work together to support research efforts, we move closer to achieving our goals– improving understanding of the mechanisms of FPIES, grasping the clinical course of this condition, and establishing effective and compassionate strategies to address daily management as well as acute care.

Our Investments

Research is an essential investment, and we dedicate a minimum of 25% of our funds annually to these projects. It is our mission to fund research that improves not only understanding of this diagnosis, but that also improves daily management of this oftentimes confounding condition.

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Investing in Our Community
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Our Partnerships

Our partnerships range from funding existing research projects to direct collaboration with researchers on specific studies. Together, we can further advance our understanding of this condition and bring about resources to aid in diagnostic and management strategies.

How Can I Become a Partner?

The FPIES Patient Registry

Our free Patient Insight Network, developed with Invitae, offers participants the chance to be a voice in research. Deidentified data is able to be seen not only by participants, but also interested researchers and practitioners who work diligently to expand the field of FPIES knowledge, best practices, and research.

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Participants Registered
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The Care Initiatives Survey: What We Learned

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Participated
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Children Represented
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Adults Represented
Individuals Reporting Symptoms of Both Acute and Chronic FPIES
48.75%
Individuals Reporting Multiple Foods Causing FPIES Reactions
76%
Individuals with a History of Hospital Admission Due to an FPIES Reaction
35.8%
Above Data from the FPIES Care Initiatives Survey, 2020

Additional de-identified data from our collection of registry surveys can be viewed by registry participants. 

Join the registry TODAY to add your voice to research!

Join the Registry

Global FPIES Registry: the FPIES Patient Insights Network

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Total Participants
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Surveys Available
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Continents Represented
Participants Reporting a Family History of Gastrointestinal Disorders, Metabolic Disorders, and/or Autoimmune Disorders
71%
Data from the FPIES GI Survey
Participants experiencing gastrointestinal symptoms/ problems when exclusively breastfed
71%
Data from the FPIES GI Survey
Participants Reporting a Significant Impact on Family Finances Due to the Cost of Specialty Foods Required for Individual FPIES Management
43%
Data from the Quality of Life Survey
Participants Experiencing Negative Impact on Milestone Development Due to FPIES Symptoms, Per Medical Provider
35.4%
Data from the Quality of Life Survey

Participants in the FPIES Patient Insights Network can complete surveys within the registry platform at anytime and data collection is ongoing at this time. It is free to register and all individuals affected by FPIES are encouraged to do so. Practitioners and researchers can register to view the de-identified data as well, and to increase their knowledge of patient experiences with FPIES. Visit www.fpiesregistry.com today to learn more! Please reach out to us with any questions you may have.

FPIES Research and Resources

In addition to exploring the resources highlighted above, you can further your understanding of FPIES and the existing research by visiting the pages below. 

Explore FPIES Medical Literature
Learn About the Microbiome Survey
Research-Themed Blog Articles

Page published: May 5, 2021. Copyright © 2021, The FPIES Foundation