Development of Food Allergy Data Dictionary: Toward a Food Allergy Data Commons.

Area of Science:

• Medical Informatics
• Clinical Research
• Allergy and Immunology

Background:

• Standardized terminology is lacking for food allergy (FA) data, hindering inter-institutional data exchange.
• Current clinical terminologies have limited coverage of essential FA concepts.
• This gap impacts research reproducibility and clinical care coordination.

Purpose of the Study:

• To assess the coverage of FA concepts in existing clinical terminologies.
• To develop and evaluate a comprehensive Food Allergy Data Dictionary (FADD).
• To facilitate structured data collection and analysis in food allergy research.

Main Methods:

• Systematic review of allergy/immunology templates and intake forms from four academic medical centers.
• Expert panel discussions to identify key FA clinical concepts and data elements.
• Iterative refinement of a candidate ontology, manual mapping to existing terminologies (ATHENA), and expert vetting across 22 FA centers and 3 industry partners.

Main Results:

• A consensus version 1.0 FADD was finalized, containing 936 discrete FA concepts across 14 categories.
• Categories included FA-specific concepts (e.g., trigger foods) and general healthcare elements (e.g., medications).
• While many FA concepts are present in existing terminologies, critical concepts remain absent.

Conclusions:

• The FADD offers a practical tool for enhancing structured coding of FA data.
• It supports both research and clinical applications by providing a standardized vocabulary.
• The FADD lays the groundwork for developing standardized FA structured data entry forms.