Obtaining Registry Data for Research

Searching the Core Registry or e-REC 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 Core Registry and e-REC have not been subjected to any specific check for quality control by EuRRECa/EuRR-Bone 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 Core Registry or e-REC, 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. 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 Core Registry or e-REC. The team can provide advice on the study process and design and liaise with Registry users. Currently data provision and support does not incur a fee.

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.