Acute AI Events in CAH Project

Previous work using data from the I-CAH Registry (‘Real World Estimates of Adrenal Insufficiency Related Adverse Events In Children with CAH) showed the potential of the Registry to act as a tool to create clinical benchmarks in CAH care.

All I-CAH centres that participate in this project are provided with an individualized report that provides information on the quality of the data in the I-CAH Registry and the quality of care, as reflected by sick day episodes and adrenal crises (benchmarking report example). Participating centres are encouraged to update the I-CAH Adverse Events dataset on patients at 6-monthly intervals.

Centres who participated in 2019

AarhusAmsterdam  Belgrade – EndocrinologyBerlin
Bern  Birmingham Children’s HospitalBolognaBudapest  
Buenos Aires- CEDIECairo Ain Shams UniversityCambridge  Colombo  
CraiovaGhent University HospitalGlasgow RHCBaskent University Istanbul Hospital
Istanbul Zeynep Kamil  London Barts EndocrinologyMagdeburg  Marmara  
Munich Technical UniversityNijmegen  Schneider’s Children Medical Center, Tel Aviv Porto Alegre  
Porto Alegre – Catholic UniversityRotterdam  Sao Paulo  Sheffield Children’s Hospital  
Stockholm  Torino – RMCHUtrecht  Varna

This exercise is now being repeated for 2022. Further details

If you would like to participate in this project please complete the sign-up form: