The management of CAH remains difficult despite international guidelines and consensus, and clinical practice varies substantially throughout the world. This project aims to identify the differences in clinical practice in the management of infants with 21-hydroxylase deficiency CAH and also explore the trends in the demographics of these infants. This would enable us to develop standards of early care and improve the outcomes of patients with this condition.
We aim to use data from the Registry to investigate the variation in clinical management in infants with 21-hydroxylase deficiency CAH in the first 3 months of life. These data will provide us with the resources to create benchmarks and develop standards of care for the early management of these infants.
Further details regarding the study can be found here:https://sdmregistries.org/wp-content/uploads/2022/08/details-of-study-early-management-of-cah-justin-davies.docx
The activities of the Registries are overseen by the Steering Committee. New studies and projects and requests for data are reviewed by the Data Access Committee which reports to the Steering Committee. Care Quality Improvement (CQI) Projects such as this one are also approved and overseen by the CQI committee. Day to day management of the registries is undertaken by the Project Management Group. For further details visit https://home.sdmregistries.org/governance/
Core Project Group
Justin Davies & David Lim, Southampton Children’s Hospital
Michele O’Connell, The Royal Children’s Hospital & Murdoch Children’s Research Institute, Melbourne
Faisal Ahmed & Salma Ali, Developmental Endocrinology Research Group & Office for Rare Conditions, University of Glasgow
Navoda Atapattu, Lady Ridgeway Hospital, Colombo, Sri Lanka
Aneta Gawlik, Medical University of Silesia, Katowice, Holstein
David Sandberg, Child Health Evaluation and Research Center, Ann Arbor
Margarett Shnorhavorian, Seattle Children’s Hospital
Nils Krone, University of Sheffield
If you would like to participate in this project please complete the sign-up form:
Last Revised: 21st July 2023