ISSN 1662-4009 (online)

ey0021.13-15 | Identifying Health Disparities and Improving Access to Healthcare | ESPEYB21

13.15. The I-CAH registry: a platform for international collaboration for improving knowledge and clinical care in congenital adrenal hyperplasia

X Tseretopoulou , J Bryce , M Chen , M McMillan , AK Lucas-Herald , SR Ali , SF Ahmed

Brief Summary: The authors describe the development and utility of an international collaborative database in congenital adrenal hyperplasia (CAH). I-CAH serves as a tool for benchmarking clinical care and supporting research and development of novel therapies.Rare disease registries can form the basis of best practice guidelines and allow for monitoring of new drugs and therapeutic interventions. The I-CAH Registry was developed as an international plat...