In DSD, gonadectomy may be performed for a few different reasons and previous work performed using the Registry has shown that there is some variation in the practice.
The aim of this quality improvement project is to undertake continued surveillance of the occurrence of gonadectomy in a suspected or confirmed case of DSD.
How does it work?
Each month participating centres will be asked if a gonadectomy has been performed in a suspected or confirmed case of DSD at that centre. Where this procedure has been performed, a follow-up survey will be issued to capture further information on the routine clinical management of the case. This follow-up survey will only be performed in those cases where informed consent has been obtained for inclusion of the case in the Registry. Where an individual has not yet been included in the Registry and gives consent at a future date, we would also welcome the opportunity to include their follow-up survey information at a later date.
It is important to collect responses of zero cases of gonadectomy performed as well as actual cases, as that also informs the survey project. If centres agree to take part, we do not plan to send any reminders for the monthly survey and a lack of a response will be taken as a void response rather than a response that a gonadectomy was not performed in the past month. Those centres that have two or more void responses in any six month period will not be included any further in the survey.
When centres submit the form, the I-DSD team will be able to capture the email of the respondent as a record of submission. Centres can unsubscribe at any time. Further details regarding the study can be found here: https://sdmregistries.org/wp-content/uploads/2022/09/details-of-study-gonadectomy-in-dsd-michele-oconnell.docx
The activities of the Registry 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 I-DSD CQI committee. Day to day management of the Registry is undertaken by the Project Management Group. For further details visit Governance
Core Project Group
Michele O’Connell (Melbourne)
Margarett Shnorhavorian (Seattle)
Justin Davies (Southampton)
Faisal Ahmed (Glasgow)
Angela Lucas-Herald (Glasgow)
If you would like to participate in this project please complete the sign-up form: