After registration to the EuroLVD registry, data are submitted by the centers, via a secure web application, in a REDCap® (Research Electronic Data Capture) database.
Each patient’s datasetwill be assigned a unique identification code (record ID) by the REDCap®system that will be used by the center that created the corresponding dataset to identify the patient.
Hence, no personal detail will be recorded on the registry and pseudoencryptionof data for identification of patients will be held by the centers.
Participating centers will have permission to exclusively access their own data entries but will not be granted access to other centers data or the full registry itself.
Patients’ data can be collected retrospectively and prospectively.
When registered members of EuroLVD wish to initiate a research project using all data from this registry, they will need to submit a request to the members of the Scientific Committee of the LVD Registry. Upon approval, anonymized data will be extracted from the registry by the EuroLVD data management team.
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