Obtaining Registry Data for Research

Searching the Registry for data at centres other than the user’s own centre is only possible by the Registry Team. The data that are held on the Registry have not been subjected to any specific check for quality control by I-DSD, I-CAH or I-TS and researchers are advised to practice due diligence and confirm the validity of the information with the clinician responsible for data entry.

To obtain data from the Registry, prospective investigators should have a look at the Data Access Policy and the Publication Plan and complete the Data Request Form and the Data Sharing Agreement. They should also look at the Data Dictionary and select and briefly justify the data fields that they would like to collect on the Data Justification Form. All the paperwork is accessible through the links below. However, before completing these forms, please contact the Registry Team which has extensive experience in supporting investigators in maximising the research potential of the data in the Registry. The team can provide advice on the study process and design and liaise with Registry users. All activities including data provision will incur a fee and this will depend on the nature of the required support and prospective investigators are asked to discuss this with the team at the start of the submission process.

Deadlines for Data Request – New for 2022: Data requests can be submitted at any time but will only be reviewed by the Data Access Committee after the following deadlines annually:

31st March and 30th September

Once submitted the Data Request Form and Data Justification Form are sent to the Data Access Committee for approval. Following submission, it takes about 6-8 weeks for the investigators to hear of the final outcome of their request and a further 6-8 weeks to launch the study and start obtaining the data. Investigators should plan their studies around these timelines.

Data Request Form

Data Dictionary & Justification of Data Request