Does the registry speak your language? A case study of the Global Angelman Syndrome Registry

About this research

This study explored how language can be a barrier to participation in global rare disease registries and described the approach used to make the Global Angelman Syndrome Registry more accessible to families around the world.

The Registry combined technology with community involvement to translate and review Registry content in multiple languages. Following the introduction of Spanish, Traditional Chinese, Italian and Hindi translations, participation increased in the regions where these languages are spoken.

The study demonstrates how multilingual registries can help improve global participation and representation in rare disease research, while providing a practical and scalable approach for other rare disease registries.

Read the full publication

This publication is open access and available through the Orphanet Journal of Rare Diseases.