Queen Mary University of London
Partnership with Queen Mary University of London
From March 2019-October 2021, the Yale University Open Data Access (YODA) Project enabled scientists across the world to gain access to the clinical trial data supporting the graded exercise therapy guided self-help trial (GETSET), which compares the efficacy and safety of guided graded exercise self-help (GES) added to specialist medical care (SMC) with SMC alone for patients with chronic fatigue syndrome (results from the graded exercise therapy guided self-help trial were published in Lancet in June 2017). This partnership established an independent process that promoted open science and had a goal of leveraging prior research investments to produce new knowledge.
The YODA Project performed independent scientific reviews of investigator requests for the participant-level data underlying the GETSET trial. QMUL conferred on the YODA Project the authority to make decisions about the release of this clinical trial data. This allowed all requests for the clinical data to be fairly judged and decided upon by an independent academic partner. No requests were received to use the GETSET data.