Publication of the ‘Real World Estimates of Adrenal Insufficiency Related Adverse Events In Children with CAH‘ showed the potential of the I-CAH Registry to act as a tool to create clinical benchmarks in CAH care.
All I-CAH centres that participated in this project are provided with a biennial, individualized report which 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 so that we can continue providing these biennial reports.
Participating Centres
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 Medical Faculty, Dept of Pediatric Endocrinology, Istanbul Hospital |
Istanbul Zeynep Kamil | London Barts Endocrinology | Magdeburg | Marmara |
Munich Technical University | Nijmegen | Schneider’s Children Medical Center, Israel | Porto Alegre |
Porto Alegre – Catholic University | Rotterdam | Sao Paulo | Sheffield Children’s Hospital |
Stockholm | Torino – RMCH | Utrecht | Varna |