With a vision to learn more about the microbiome and its potential impact on individuals affected by FPIES, we invite you back to our Global FPIES Patient Insights Network (www.fpiesregistry.com), through our partnership with Invitae, to complete the latest patient survey, “FPIES and the Microbiome.”
This survey seeks to learn more about different factors that may have impacted our loved ones’ journeys with FPIES and what role the microbiome may play. Questions related to the birth experience, probiotic use, early nutrition information, and even geographical factors all will hopefully help to provide a clearer picture of any patterns that may arise among affected individuals. To learn more about what the microbiome is, be sure to check out webinars by professor/researcher and FPIES mom Dr. Jeanelle Boyer in our Online Learning Library.
A key feature of the survey is the series of questions regarding the individual’s reactions or tolerance of specific foods. The list of foods, though not completely comprehensive, is certainly expansive in the variety of specific foods and related categories that it covers! It is our hope that the data submitted here will give clinicians and researchers a clearer picture of the variety of foods that may be implicated in FPIES reactions. This is so important for professionals to have this information when they are guiding families through the process of food trials and when they are trying to discern potential reactions.
How can you participate? Its free and easy—just go to www.fpiesregistry.com to register! If you already are registered, go the same link and login to your account. Keep in mind that when you are a survey participant, the information you submit will remain private. When viewed in charts/ graphs, the data is de-identified, so you and your loved one’s identity remains protected. In addition, you, as a participant, will be able to view the de-identified data yourself. The results of all currently submitted surveys are interesting to see, and we anticipate this latest addition will be no exception!
If you don’t have time to complete the survey in one sitting, that’s okay—your responses will be saved and you can come back to complete the survey later on. This survey may take you about 10-20 minutes to complete, though of course timeframe can vary from participant to participant. Remember– every voice is essential to contributing to a better understanding of FPIES and those affected by it! Make it your New Year’s resolution to contribute your family’s voice to research TODAY by completing the FPIES and the Microbiome survey at www.fpiesregistry.com!
This post was written by Amanda LeFew, Co-Director/Co-Founder.