Data elements collected within PH registries: A scoping review

Presented at PVRI 2026 Congress by Kari Gillmeyer, Boston University & Sarah Cohen, The Ohio State University & Nationwide Children's Hospital

Summary

A scoping review uncovers 164 PH registries across the globe, revealing their distribution and data practices. Most registries are located in high-income countries, with low-income regions significantly underrepresented. The review highlights challenges in data standardisation and completeness, pointing out the need for improved quality. It emphasises the importance of diverse patient representation and aims to enhance understanding and management of PH.

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