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 and researchers are advised to practice due diligence and, if indicated, confirm the validity of the information with the reporting centre.
To obtain data from the Registry, prospective investigators should have a look at the following documents:-
Data Dictionary & Justification of Data Request
In the Data Dictionary please select and briefly justify the data fields that need to be collected on the Data Justification Form. However, before completing these forms, please contact the Registry Team which has extensive experience in supporting investigators.
Data Access & Support Fees
Although there is no fee for submitting an application, the fee for launching an investigator-led study is currently set at £3000. Subsequently, all studies are reviewed 6-monthly and investigators are invoiced for ongoing support at £200 per hour. On average, studies require about 10 hrs of support per year but this will vary depending on the complexity of the study.
A 50% discount to the launch fee is applicable if the lead applicant is based:-
– At a centre that is seeking data from SDMregistries for the first time
– At a centre that was awarded a Research Participation Award at the last biennial meeting of I-DSD.
It is mandatory to discuss your project with the Registry team in detail at least one month prior to the submission deadline
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 every year:
31st March and 30th September
Process After Submission
Once submitted the application is sent to the Data Access Committee for approval. Following submission, it takes about 6 weeks for the investigators to hear of the final outcome of their request and a further 8 weeks to launch the study. The Registry Team will arrange routine meetings with the Study PIs at launch, 3 months post-launch and then 6 monthly to continue supporting the study.