The I-DSD Registry provides a means of connecting clinical and research centres around the world within a virtual environment and allows these experts to enter standardised information that will improve clinical practice, research and understanding of these challenging conditions. For further information please visit the I-DSD website .
Prospective registry users can apply for access through the link 'Create A New Account'.
There are currently 4 types of User.
|Clinical User||Often part of team in a centre with one Centre Lead. Clinical users can upload and edit cases but only the centre lead can delete cases and maintains responsibility for all clinical data in their centre. Clinical users can view the full dataset of cases they upload but only the core dataset of all other available cases.|
|Research User||To use the registry to conduct primary or secondary research an additional approval process is required. Please visit the Research area of the I-DSD website for details. Once approved, a research user will be able to view the full dataset of all available cases for a fixed period of time which can be extended on provision of a progress report.|
|Network User||Can search other user's profiles for networking reasons. No access to any records.|
|Participant 'User'||A participant in the registry can be provided access to a portion of their own data by the clinician at their centre. For details see the participant access guidelines|
Access to the Registry is routinely suspended after 12 months of inactivity.
Practitioners in the I-DSD registry are invited to take part in an on-line survey on Healthcare provision in DSD. For more information and a link to the survey please click here.
For all enquiries relating to the Registry and Network, please contact Jillian Bryce
|Dr Jillian Bryce|
|I-DSD/I-CAH Project Manager|
|School of Medicine|
|University of Glasgow|
|Level 0, Zone 1, Office Block (Paediatrics)|
|Queen Elizabeth University Hospital Campus|
|Govan Road, Glasgow, G51 4TF, UK|
|Tel: +44 (0) 141 451 5843|