Previous work (‘Real World Estimates of Adrenal Insufficiency Related Adverse Events In Children with CAH‘) performed in 2019 on datasets in the Registry showed the potential of the Registry to act as a tool to create clinical benchmarks in CAH care.
All centres that participate in this project are provided with an individualized report that provides information on the quality of the data in the 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 CAH Adverse Events dataset at 6-monthly intervals. The most recent benchmarking reports were issued in 2023 and reports will be issued to participating centres at 3-yearly intervals. Further details Studies #201808_SA.
If you would like to participate in this project please complete the sign-up form:
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