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
I-DSD 