Obtaining Registry Data for Research

If you are considering a Registry study or project, the first step is to contact the Project Management Group (PMG), who will guide you through the process. Please get in touch with the PMG at least one month before the submission deadline.

Searching the Registry for data from centres other than a user’s own centre is only possible through the PMG. Please note that all the data held in the Registry have not been subjected to specific quality control checks, and researchers are advised to exercise due diligence when using these data.

To obtain data from other centres, prospective investigators must apply to the Data Access Committee by completing the Research Request Form and Data Justification Form, specifying and briefly justifying the required data fields.

Before completing the forms, please review the documents below and consider contacting the PMG, who can provide guidance based on their experience supporting investigators.

Deadlines for Research Request
Research requests can be submitted at any time but will only be reviewed by the Data Access Committee after the following deadlines every year:

Process After Submission

Once the submitted Research Request Form and Data Justification Form are sent to the Data Access Committee (DAC) for approval. The review process typically takes about 4 weeks, during which the DAC will evaluate the request and provide feedback through the Data Access Committee Feedback Form

Following submission, it takes about 6 weeks for the investigators to hear of the outcome of their request. Following the feedback of the DAC, the investigators may need to make some changes to the original application and provide a response to the comments of the DAC and a further 8 weeks to launch the study.

Process After Approval

The PMG will work with the investigators to launch the study by developing a summary of the study that will be posted on the website and provided to reporting centres with eligible cases. Reporting centres will then decide whether they would like to participate in the study. If they do agree to participate, they will be provided instructions on timelines. Data tranches are usually performed in March and September every year and investigators should plan their studies and outputs around these timelines. The PMG will arrange routine meetings with the Study PIs at initiation, launch, 3 months post-launch and then 6 monthly to continue supporting the study and the investigators will submit an annual progress report to the DAC.

Amendment to protocol already approved by DAC. An amendment to an approved study can be undertaken by submitting a letter to the PMG. Extension of the duration of the study, extension of the geographical region or addition to the core group of investigators/applicants are considered a minor amendment. However, any other amendments may require the input of the DAC.

Last Modified