Obtaining Registry Data

To obtain data from the Core Registry or e-REC, prospective investigators should have a look at the Data Access Policy and complete the Data Request Form (see below). The registries are open access, meaning that any stakeholder can request data if our data access policy is followed.

Please contact the Registries Team at registries@lumc.nl before completing the Data Request Form. The Registries Team has extensive experience in supporting investigators in maximizing the research potential of the data in the Core Registry or e-REC. Our team can provide you with advice on the study process and design and liaise with registry users. A formal written agreement must be signed before sharing data with investigators. For centres contributing data to our registries we use a Joint Data Registry Agreement (JDRA) to share data. The JDRA is an agreement specifically developed to define roles, responsibilities, and GDPR-compliant governance for multicentre registry collaborations to facilitate future research. For non-contributing centres we use a Data Sharing Agreement. All activities including data provision will incur a fee and prospective investigators are asked to discuss this with our team before submission.

Once submitted your Data Request Form is 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.

• Data Request Form
• Joint Data Registry Agreement (972 KB)
• Data Access Policy (795 KB)
• DAC Feedback Form

Publication Guidance

When publishing data obtained from the registries, please follow our publication guidelines. If you have any questions, please contact the registries team at registries@lumc.nl.