Multicenter food protein–induced enterocolitis syndrome (FPIES) data collection: Leveraging a REDCap FPIES registry for improved clinical outcomes

Ankona Banerjee, MSc; J. Andrew Bird, MD; Amy M. Scurlock, MD; Pooja Varshney, MD; Elizabeth Brunner, MD; Ankur Bhagwath, BSc; Benjamin Daines, MD; Malika Gupta, MD; Tevon Hood, DO; Maria Lee, MD; Michelle Lee, BScA; Emily Seminara, BA; Rachel Smith, RN; Gail Tan, MD; Marion Jose Valladares, MD; Hiral Waghela, MD; Duc T. Nguyen, MD, PhD; Sara Anvari, MD, MSc

Journal of Allergy and Clinical Immunology: Global (May 2025)

Multicenter food protein–induced enterocolitis syndrome (FPIES) data collection: Leveraging a REDCap FPIES registry for improved clinical outcomes

Ankona Banerjee, MSc,
J. Andrew Bird, MD,
Amy M. Scurlock, MD,
Pooja Varshney, MD,
Elizabeth Brunner, MD,
Ankur Bhagwath, BSc,
Benjamin Daines, MD,
Malika Gupta, MD,
Tevon Hood, DO,
Maria Lee, MD,
Michelle Lee, BScA,
Emily Seminara, BA,
Rachel Smith, RN,
Gail Tan, MD,
Marion Jose Valladares, MD,
Hiral Waghela, MD,
Duc T. Nguyen, MD, PhD,
Sara Anvari, MD, MSc

Affiliations

Ankona Banerjee, MSc: Department of Pediatrics, Division of Epidemiology, Baylor College of Medicine, Houston, Tex; Ankona Banerjee, MSc, 6620 Main St Ste 1530.02, Houston, TX 77030.
J. Andrew Bird, MD: Department of Pediatrics, Division of Allergy and Immunology, University of Texas Southwestern Medical Center, Dallas, Tex
Amy M. Scurlock, MD: Department of Pediatrics, University of Arkansas for Medical Sciences, Arkansas Children’s Hospital and Research Institute, Little Rock, Ark
Pooja Varshney, MD: Department of Pediatrics, Division of Allergy and Immunology, Dell Medical School at the University of Texas Austin, Dell Children’s Medical Center, Austin, Tex
Elizabeth Brunner, MD: Department of Pediatrics, Division of Allergy and Immunology, University of Texas Southwestern Medical Center, Dallas, Tex
Ankur Bhagwath, BSc: Department of Pediatrics, Division of Allergy and Immunology, University of Texas Southwestern Medical Center, Dallas, Tex
Benjamin Daines, MD: Department of Pediatrics, Division of Allergy, Immunology, and Retrovirology, Baylor College of Medicine, Texas Children’s Hospital, Houston, Tex
Malika Gupta, MD: Department of Pediatrics, Division of Allergy and Immunology, University of Texas Southwestern Medical Center, Dallas, Tex
Tevon Hood, DO: Department of Pediatrics, Division of Allergy and Immunology, Dell Medical School at the University of Texas Austin, Dell Children’s Medical Center, Austin, Tex
Maria Lee, MD: Department of Pediatrics, Division of Allergy, Immunology, and Retrovirology, Baylor College of Medicine, Texas Children’s Hospital, Houston, Tex
Michelle Lee, BScA: Department of Pediatrics, Division of Allergy and Immunology, Dell Medical School at the University of Texas Austin, Dell Children’s Medical Center, Austin, Tex
Emily Seminara, BA: Department of Pediatrics, University of Arkansas for Medical Sciences, Arkansas Children’s Hospital and Research Institute, Little Rock, Ark
Rachel Smith, RN: Department of Pediatrics, Division of Allergy and Immunology, Dell Medical School at the University of Texas Austin, Dell Children’s Medical Center, Austin, Tex
Gail Tan, MD: Department of Pediatrics, Division of Allergy, Immunology, and Retrovirology, Baylor College of Medicine, Texas Children’s Hospital, Houston, Tex
Marion Jose Valladares, MD: Department of Pediatrics, Division of Allergy, Immunology, and Retrovirology, Baylor College of Medicine, Texas Children’s Hospital, Houston, Tex; Pediatric Center for Research Advancement, Baylor College of Medicine, Houston, Tex
Hiral Waghela, MD: Department of Pediatrics, Division of Allergy, Immunology, and Retrovirology, Baylor College of Medicine, Texas Children’s Hospital, Houston, Tex
Duc T. Nguyen, MD, PhD: Department of Pediatrics, Division of Epidemiology, Baylor College of Medicine, Houston, Tex
Sara Anvari, MD, MSc: Department of Pediatrics, Division of Allergy, Immunology, and Retrovirology, Baylor College of Medicine, Texas Children’s Hospital, Houston, Tex; Texas Children’s Hospital, William T. Shearer Center for Human Immunobiology, Houston, Tex; Corresponding authors: Sara Anvari, MD, MSc, 1102 Bates Ave Ste 330.11, Houston, TX 77030.

Journal volume & issue: Vol. 4, no. 2
p. 100434

Abstract

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Background: Food protein–induced enterocolitis syndrome (FPIES) is a non–IgE-mediated food allergy typically presenting in infancy but has also been recognized in adults. FPIES is an allergic emergency due to severe vomiting occurring 1 to 4 hours after ingesting the causative food protein. Since the 2017 FPIES guidelines, no prospective data exist on the prevalence, incidence, and clinical characteristics of FPIES. Objective: We established a multicenter FPIES registry to systematically collect clinical data and biospecimens on FPIES patients. Methods: The FPIES registry is a US multicenter REDCap database collecting epidemiologic data to support the evolving FPIES landscape in relation to age at diagnosis, triggers and coreactivity, disease resolution, and risk of disease conversion to IgE allergy. Questionnaire and biosampling strategies have been developed using a systems biology approach to identify determinants of FPIES. Results: The registry includes patients with physician diagnosis of FPIES (ICD-10 code K52.21) from January 2015. Longitudinal REDCap instruments for FPIES data collection include: age at first reaction, age at diagnosis, reaction timing, symptoms, treatment, medical care or hospitalization for reaction, dietary triggers, atopic comorbidities, family history of atopy and FPIES, oral food challenge procedures (eg, intravenous line placement, dosing protocol, observation period, reaction timing, symptoms and treatment), age at food trigger resolution, food-trigger IgE, cases converting from atypical FPIES to IgE-mediated food allergy, and sample collection data. Conclusions: The registry will provide a multicenter repository of data and biospecimens, enabling identification of clinical determinants and phenotypes of FPIES, better understanding of conversion risks, and identification of biomarkers and mechanisms associated with FPIES.

Published in Journal of Allergy and Clinical Immunology: Global

ISSN: 2772-8293 (Online)
Publisher: Elsevier
Country of publisher: United States
LCC subjects: Medicine: Internal medicine: Specialties of internal medicine: Immunologic diseases. Allergy
Website: https://www.sciencedirect.com/journal/journal-of-allergy-and-clinical-immunology-global

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