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Update guidance for data custodians that can't share certain metadata fields because of extenuating circumstances #75

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amandatombolatoardc opened this issue Aug 1, 2023 · 0 comments
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@amandatombolatoardc
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In the Guidance section of the metadata profile, we need to explain what to do if a data custodian can't provide certain metadata fields due to extenuating circumstances.

For example, a trialist doesn't want to share the protocol until the results are published in a journal as they don't want their trial methods stolen beforehand.

This could happen to other metadata fields - and for other reasons as well. Should we come up with a list of legitimate reasons why metadata fields should not be provided?

For context, here is the email thread:
Marko's message:

I am emailing about a concern from some trialists, Orygen in particular. Some of their trials which are included in the catalogue are still collecting data, and some of those trials do not want to share their protocol on the ANZCTR until the results are published (the protocols are also not published in a journal).

Is it possible for those trials to add the protocol to the ANZCTR once the results have been published? I understand the hesitancy – the trial methods could be pilfered.

Kristan's response:

Yes of course - that is consistent with the discussions we've had. But it raises a good point that there are aspects of metadata provision, etc that we need to provide additional or updated guidance. This was on our to-do list and Amanda and Matthias have begun a list of updates we need to make (@amanda - could you please add this one to the list?). It will take us a little while to properly review and make those updates - and some we will need to go back to the nodes to get your feedback - so please bear with us as we work through that. In the interim, will it be ok for you to provide those assurances to your partners and let them know we will update our formal documentation ASAP?

@amandatombolatoardc amandatombolatoardc added the enhancement New feature or request label Aug 1, 2023
@amandatombolatoardc amandatombolatoardc added this to the v1.0.0 milestone Aug 1, 2023
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