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 reporting centre.
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 also accessible through the links below. However, before completing these forms, please contact the Registry Team which has extensive experience in supporting investigators. All activities including data provision will incur a fee and prospective investigators are asked to discuss this with the team before submission.
It is mandatory to discuss your project with the Registry team in detail at least one month prior to submission.
Deadlines for Data Request: 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. The Registry Team will arrange routine meetings with the Study PIs at 3 months post-launch and then 6 monthly in order to continue supporting the progress of the study.
Data Dictionary & Justification of Data Request
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