IeDEA

IeDEA provides a patient-centric common data model to standardize and exchange clinical and epidemiological HIV data for multiregional observational research.

Key Features:

• Patient-centric common data model: Structured around individual patients to capture clinical and epidemiological data specific to HIV research.
• Based on HIV Cohorts Data Exchange Protocol: Uses the HIV Cohorts Data Exchange Protocol as its foundational template.
• Informed by diverse care settings: Incorporates practices from US-based electronic health records and experience in resource-limited settings.
• Stewardship and versioning: Undergoes annual revisions and stewardship by the IeDEA Data Harmonization Working Group.
• Cross-disciplinary development: Developed through collaboration among data managers, statisticians, clinicians, informaticians, and epidemiologists.
• Multiregional harmonization: Has supported over 95 research projects using data from more than 400 HIV care and treatment sites across seven global regions.

Scientific Applications:

• Observational HIV epidemiology: Standardizes cohort data for multiregional observational studies of HIV.
• Resource-limited settings research: Enables harmonized data collection and analysis in resource-limited clinical and research environments.
• Cross-disease extensibility: Serves as a framework that can be extended for other areas of health research requiring standardized clinical and epidemiological data.

Methodology:

The model was developed by reviewing existing data schemas and clinic procedures and using the HIV Cohorts Data Exchange Protocol as a foundational template, with ongoing annual revisions by the IeDEA Data Harmonization Working Group.