SDMregistries
Research type
Research Database
IRAS ID
342704
Contact name
S. Faisal Ahmed
Contact email
Research summary
International Registries For Rare Conditions Affecting Sex Development & Maturation (formerly known as I-DSD/I-CAH)
REC name
West of Scotland REC 1
REC reference
24/WS/0059
Date of REC Opinion
18 Jul 2024
REC opinion
Further Information Favourable Opinion
Data collection arrangements
All data shall be stored on secure servers in the University of Glasgow and will be kept strictly confidential and all information will be handled through very secure
electronic systems. The Registry users will not be able to make contact with any patient because the name, address and hospital number will not be recorded. Only the hospital doctor and their team will be able to contact the patient as they can link the data in the Registry to the hospital records. To access the data from the Registry, investigators will need to apply to the Data Access Committee and once the application has been approved, the data shall be provided to the investigators with strict data sharing agreement. The provision of data will also occur through secure electronic
systems rather than just by email. Again, the data that are provided will not contain any information that can allow the investigator to link the information to the actual patient. A progress report will be obtained every year to understand the research progress of the investigators.Research programme
SDMRegistries is a project which was initially launched in 2008 as the ESPE-DSD Registry and has been developed with the needs of people with a wide range of rare conditions that affect sex development and maturation. The project has been highly successful and generated several important results. With increasing maturity it is also focussing in improving the quality of care. There are currently no other international registries for these group of conditions and around 200 centres from around 50 countries on all six habitable continents are currently using the platform.
Research database title
International Registries For Rare Conditions Affecting Sex Development & Maturation (formerly known as I-DSD/I-CAH)
Establishment organisation
The University of Glasgow
Establishment organisation address
MVLS IT Services
Sir James Black Building
G12 8QQ