Data Access Requests

The ERA Registry allows the use of its data for research purposes by applicants from academic and clinical organizations.

When external researchers wish to use the data for research they must submit a research proposal using one of the following databases: ERA Registry database, ESPN/ERA Registry database or the EQUAL database.

The research proposal enables us to assess whether the requested data are available and whether the proposed research does not overlap with studies on the Registry’s internal list of ongoing and planned studies. The proposal may be brief, but should include at least the following items: details on the applicant (education, present job position, current institute), proposed title of the research project, its background and justification, its aim, research questions and hypothesis, duration of the project, funding, data variables required, plan of statistical analysis, and level of support needed from the Registry staff. In total, the proposal should not exceed 1250 words. This proposal will be reviewed by the Registry director, ERA’s Renal Science Chair and, depending on the database, the  data lead / coordinator of the ERA Registry, ESPN/ERA Registry or EQUAL study and the EQUAL oversight committee. For some cases the proposal will additionally be reviewed by the Registry Committee.

Access to the data

The Registry data are not allowed to leave the servers of the Amsterdam University Medical Center. If a proposal is approved, external researchers who wish to conduct the analyses themselves will be granted on-site access to an pseudonymised analysis file, implying that a visit to the ERA Registry office in Amsterdam is required. This visit must have a minimum duration of 12 weeks, which can be divided into several shorter periods (e.g. 2x 6 weeks), during which analyses will be performed under the supervision of the Registry staff. A shorter visit is generally not possible. Only in exceptional cases, it could be discussed, primarily depending on the analysis skills required and the available (full-time) time to dedicate to the project. The timing of the visit will be discussed with the external researcher and depends on staff availability. After the visit, remote access may be available to finalize the manuscript. External researchers must show in advance that they have sufficient analytical skills and must comply with all information security requirements throughout the project. In addition, a support letter from a supervisor is required.

ERA has some funding available for this type of activity, in fact, external researchers who wish to visit the Registry office in Amsterdam may apply for an ERA Registry fellowship. In this case, the applications will be scored and selected by the ERA Registry Selection Committee.

Registry-led analyses

If external researchers prefer that the Registry staff performs the analyses, a detailed analysis plan will be developed by the external researcher in collaboration with the Registry staff.

Any resulting publication will need to follow the Registry’s authorship policy.

In case you would like to express your interest in an ERA Registry Data Access request, please send an email to erareg@amsterdamumc.nl.