I-DSD & I-CAH
Research type
Research Database
IRAS ID
269776
Contact name
Syed Faisal Ahmed
Contact email
Research summary
The International Registries For Differences & Disorders of Sex Development and Congenital Adrenal Hyperplasia
REC name
West of Scotland REC 1
REC reference
19/WS/0131
Date of REC Opinion
9 Sep 2019
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The data stored in the IDSD/I-CAH registry comprise medical information on a person with a condition that affects sex
development. 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 and date of birth 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 at the centre 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
In the recent past, the database has supported the MRC-UK (Medical Research Council) funded I-DSD Network research project in particular, the EU COST Action DSDnet and other EU funded studies such as dsdlife and EU-TAIN. The output from past studies are listed at https://home.i-dsd.org/researchoutput/ . Currently, it is supporting several studies across the world that are listed at https://home.i-dsd.org/ongoing-studies/ .
Research database title
The International Registries For Differences & Disorders of Sex Development and Congenital Adrenal Hyperplasia
Establishment organisation
The University of Glasgow
Establishment organisation address
MVLS IT Services
Sir James Black Building
G12 8QQ