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
|Aarhus||Amsterdam||Belgrade – Endocrinology||Berlin|
|Bern||Birmingham Children’s Hospital||Bologna||Budapest|
|Buenos Aires- CEDIE||Cairo Ain Shams University||Cambridge||Colombo|
|Craiova||Ghent University Hospital||Glasgow RHC||Baskent University Istanbul Hospital|
|Istanbul Zeynep Kamil||London Barts Endocrinology||Magdeburg||Marmara|
|Munich Technical University||Nijmegen||Schneider’s Children Medical Center, Tel Aviv||Porto Alegre|
|Porto Alegre – Catholic University||Rotterdam||Sao Paulo||Sheffield Children’s Hospital|
|Stockholm||Torino – RMCH||Utrecht||Varna|
This exercise is now being repeated for 2022. Further details https://home.i-dsd.org/ongoing-studies/#201808_SA