The I-DSD Registry v2.0
Research type
Research Database
IRAS ID
153634
Contact name
Syed Faisal Ahmed
Contact email
Research summary
The International DSD Registry
REC name
West of Scotland REC 1
REC reference
14/WS/1050
Date of REC Opinion
26 Aug 2014
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The data stored in the I-DSD registry comprise medical information on a person with a condition that affects sex development, ie a disorder of sex development (DSD). The core data that are collected include the location and name of the lead clinician at the hospital which the affected person attends. This clinician is responsible for the clinical care of the affected person. In addition,
the core data includes some basic information including the diagnosis of the affected person. This affected person is assigned a unique number in the registry but cannot be identified by any external user of the registry. The clinical lead is the only user who can identify the affected person by keeping this unique number separately in the hospital records. These core data are the only sets of data that need to be completed in all cases. There are other sections (called modules) which are not mandatory and apply to specific aspects of care of DSD. These data can be updated as and
when necessary.Research programme
The database supports the MRC-UK (Medical Research Council) funded I-DSD Network research project in particular, and more recently the COST Action DSDnet, and will lead to support of further research programmes and communities around the world, such as EU funded dsdLife and EUTAIN.
Research database title
The International DSD Registry
Establishment organisation
The University of Glasgow
Establishment organisation address
IT Services, Room R216A Level 2
Kelvin Building
University of Glasgow
G12 8QQ