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Guide to Sharing De-Identified Human Subject Data

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The purpose of this document is to provide an overview of considerations for publishing de-identified, individual human subject data in preparation for publication. Human subject data may be classified as sensitive data, which are data that contain personal information, such as protected health information, and any other data that is likely to negatively harm an individual or community if publicly released. The ASAP Open Science Policy requires that sensitive data must be deposited to the extent allowed by the associated research ethics approval. If the data can be openly shared, then we require these data be deposited in a publicly accessible repository. If the data cannot be openly shared, but can be shared with restricted or controlled access, then it must be shared as restricted or controlled data, and come with instructions for how to request access to the data. Please note that we require that grantees collecting data from human participants to provide evidence that there has been satisfactory review and approval of the plan to collect and/or share such data from the appropriate ethics committee(s) (or evidence that no such approval is required).
Aligning Science Across Parkinson's
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