An assessment of the quality of the I-DSD and the I-CAH registries - international registries for rare conditions affecting sex development

摘要

BackgroundWith the proliferation of rare disease registries, there is a need for registries to undergo an assessment of their quality against agreed standards to ensure their long-term sustainability and acceptability.This study was performed to evaluate the I-DSD and I-CAH Registries and identify their strengths and weaknesses.