Use of the Registry

Use of the Registry

The registry can be used by clinical users and researchers approved by a Registry panel within the Steering Committee.

Once approved the following actions can be completed using the registry:

  • Browsing limited clinical information already within the registry
  • Uploading clinical information to be shared within the network
  • Editing records (that you own) - records can be deleted only by Centre leads


To Access the Registry

Access to the registry is applied following completion of the on-line registration through the link ‘Create A New Account’. 

There are currently 2 levels of access.

1. Clinical Users are often part of team in a centre with one centre lead.  Clinical Users can upload and edit their own cases but only the centre lead can delete cases and maintains responsibility for all clinical data in their centre.  Clinical Users can view the core dataset of all available cases and the full dataset of their own cases. 

2. Network Users can search other registered users profiles for networking purposes.  These users have no access to patient data.

In order to maintain an active registry, Clinical User accounts are converted to Network User accounts after 12 months of inactivity and suspended completely after a further 12 months of inactivity. 

Since April 2016, Research User accounts are no longer available.  To access registry data for research purposes, please see the Research section


Connect to the I-DSD Registry


  I-DSD Registry