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Why should investigators provide a list of participant IDs to the NHLBI?

April 26, 2017IDs investigators list NHLBI participant

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Why should investigators provide a list of participant IDs to the NHLBI?

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Study IDs should be replaced with new randomized IDs. Since NHLBI serves as the data repository, the link between the randomized IDs and the original study IDs is requested as a backup for the study in case delinking the data is needed for an unforeseen purpose. Participant IDs may be sent to NHLBI in several formats. One is to include all participant IDs with indicators for permission to share data and permission to share data for a commercial purpose . Another approach is to supply separate files of IDs. One file would list only the IDs for which the data can be shared for the purpose of non-commercial research (non-commercial purpose) and one file for which the participants indicated that their data could be shared for any reason (commercial purpose).