The ERA-EDTA Registry provides access to its data to applicants from academic and clinical organizations. When such external researchers wish to access our pseudonymised individual patient data they must submit a research proposal. This will enable us to judge if the data needed are available and the proposed research is not already on the Registry’s internal list of ongoing and planned studies. This proposal may be short, but should contain 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. Altogether the proposal should not exceed 1250 words.
The proposal will then be judged by the Registry director, its Chairman and for some cases by the Registry Committee. The Registry data are not allowed to leave the servers of the Amsterdam University Medical Center and therefore, if approved, external researchers will only be provided on-site or remote access to an analysis file, including only those patients and those variables that are required to answer the research question. External researchers will need to follow a very short Good Clinical Practice (GCP) course before receiving access to the data and they will have to perform their analysis under the supervision of one of the Registry’s employees. Any resulting publication will need to follow the Registry’s authorship policy. In case you would like to express your interest in access to Registry data, please send an email to firstname.lastname@example.org.
Department of Medical Informatics
Amsterdam University Medical Centers, location AMC
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