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.
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.
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.
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.
The Care Initiatives Survey: What We Learned
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!
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.
Page published: May 5, 2021. Copyright © 2021, The FPIES Foundation