jimells
Senior Member
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- 2,009
- Location
- northern Maine
Action for M.E. strongly supports the release of anonymised data from the PACE trial.
https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/
In a stunning about-face for an organization that has been closely tied to PACE since it was first proposed, Action for ME has now joined the chorus of calls for releasing the data. The organization will also now specifically require the release of data for all future research that it funds.
In addition, the Board has agreed that any future research will only be funded by Action for M.E. if the researchers agree to share, appropriately in an anonymised form, their raw data, in line with the protocol set by their academic institution.