The Registry

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 .

To Access the Registry

Prospective registry users can apply for access through the link 'Create A New Account'.

There are currently 3 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 granted 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.

Survey

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.


Contact Us:

For all enquiries relating to the Registry and Network, please contact Jillian Bryce

Dr Jillian Bryce
I-DSD/I-CAH Project Manager
Child Health
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
Jillian.Bryce@glasgow.ac.uk