Background
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.
Aim
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?
The project began in December 2022 and is currently scheduled to continue until the end of 2024. New centres are welcome to join while the study is open. Each month participating centres are sent an automated email survey, asking whether a gonadectomy has been performed in a suspected or confirmed case of DSD at that centre in the previous month. Where a gonadectomy has been performed, a follow-up survey is 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.
To allow us to better assess the relative frequency of gonadectomy, we also ask participating centres to actively record responses of zero cases of gonadectomy performed. 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. Cases / responses can however be notified at a later date, while the study remains open. Those centres that have four void responses in any six-month period will not be included any further in the survey.
Centres can unsubscribe at any time. The participation of all centres shall be acknowledged in all outputs and those that complete the detailed questionnaire on any reported case of gonadectomy will be invited to provide input into the outputs as coauthors. Further details regarding the study can be found here: https://sdmregistries.org/wp-content/uploads/2024/02/details-of-study-gonadectomy-in-dsd-michele-oconnell-.pdf
The current list of participating centres in the consortium can be viewed here: https://sdmregistries.org/i-dsd-gonadectomy-surveillance-consortium/.
Governance
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:
Last revised