Using the Registry for Research 

This information in the Registry has been entered by clinicians looking after affected participants. These data can be accessed for primary or secondary research subject to approval (see procedure below).  The data held on the registry has not been subjected to any specific check for quality control by I-DSD and researchers are advised to practise due diligence and confirm the validity of the information with the clinician responsible for data entry.

Reasons for requiring Research Support from the Registry

  • Designing a Study
  • Obtaining Funding
  • Launching a Study (may require additional local ethical approval)

Procedure for obtaining Registry data for Research

From April 2016, searching the Registry for data at centres other than the user’s own centre will only be possible by the project management team. Depending on the amount of work involved these searches will incur a small fee and researchers are advised to contact Jillian Bryce for further information.

Clinical and Networking Accounts continue to be available upon request via or

Search Rates:

  • £100 for the 1st hour
  • £75 per hour thereafter. 
  • Minimum fee is 1 hour. Most searches and basic analyses will take less than an hour.
  • Concessions available (e.g. developing countries, junior researchers).

The I-DSD office can provide more extensive study support depending on the investigator’s needs and may include:-

  • Advice on study process and design 
  • Liaising with Registry users on behalf of the study investigators
  • Developing study specific modules

Prospective investigators should contact Jillian Bryce before embarking on, developing, or seeking funding for the study so that the costs of this proposed work can be clarified.  Please complete a Data search form and a Data Sharing Agreement.

The I-DSD research support fund may be approached for funding to cover the costs of data searching.


The I-DSD Registry must be acknowledged on all publications that use the data with the following text. 

“This research study was conducted through access to data held in the I-DSD registry ( supported by funding from MRC award G1100236.”