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Update on QMUL and sharing research data

March 24, 2016

The Information Commissioner’s Office (ICO) has made a ruling in response to a request made to Queen Mary University London (QMUL) under the Freedom of Information Act.

This ICO ruling, which was made earlier this month, relates to two specific data variables from the PACE trial, and states that QMUL was correct in its decision not to supply the data.

Action for M.E. understands that these variables are part of a larger data set that is the subject of a separate ICO decision made in October 2015, which ruled that the data set should be released.

QMUL have appealed to the Information Tribunal regarding this ruling and the case will be heard in April. It is unclear what bearing the most recent ruling will have on proceedings.