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REPORT

Contents Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Regulatory Obligations for Data Retention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Regulatory Obligations and Long-Term Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Data for Secondary Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Push for Secondary Data Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Barriers and Issues with Secondary Use of Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Appropriate Preparation of Data for Re-use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Maximizing Scientific Value with Data Standards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Managing Data and Data Repositories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Trials Unit Systems for Managing Secondary Re-use of Individual Participant Data . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Key Facts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

2 2 5 9 9 11 13 17 21 22 25 26 27 27

Abstract

The reasons for retaining data after a study is finished are reviewed. The nature and implications of the legal obligations to keep data are explored, with a brief discussion around each of the main questions that need to be considered. The increased pressure to make individual-level data available to others is then examined. Some of the barriers to such secondary use, or “data sharing”, are described as well as some of the ways data re-use can be anticipated and thus facilitated. Practical issues such as data de-identification and data use agreements are discussed. The importance of promoting data inter-operability using standards and common vocabularies is stressed, followed by a brief discussion about data repositories and the selection of a suitable long-term home for data. Processes and systems to support the secondary

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