The tribunal noted the "strong public interest in releasing the data given the continued academic interest" and "the seeming reluctance for Queen Mary University to engage with other academics they thought were seeking to challenge their findings."
A tribunal in the U.K. has ruled that data from a clinical trial into chronic fatigue syndrome (CFS) must be released, according to an announcement by MEAction, an international patient network for Myalgic Encephalomyelitis. The tribunal rejected an appeal from Queen Mary University of London (QMUL).
The trial, called PACE, was a £5 million, publicly funded clinical trial of exercise and cognitive behavioral therapy for CFS. QMUL spent over £200,000 on legal fees in this case to appeal against the Information Commissioner’s decision that they should release anonymized data, stated MEAction. To allow analysis of the data according to the study’s original published protocol, the request for data was made under the Freedom of Information Act.
QMUL claimed the data was personally identifiable information and was not sufficiently anonymized, but the tribunal rejected these arguments, noting that QMUL had already shared the data with a small selection of other scientists, the release continued. The tribunal was satisfied that the data “...has been anonymized to the extent that the risk of identification is remote.”
The tribunal also noted the "strong public interest in releasing the data given the continued academic interest" and "the seeming reluctance for Queen Mary University to engage with other academics they thought were seeking to challenge their findings," MEAction added.
In its submissions, QMUL made a number of accusations of harassment from patients, while QMUL’s expert witness characterized PACE trial critics as "young men, borderline sociopathic or psychopathic", but the Information Commissioner dismissed these remarks as "wild speculations", according to the statement.
AI in Clinical Trials: A Long, But Promising Road Ahead
May 29th 2024Stephen Pyke, chief clinical data and digital officer, Parexel, discusses how AI can be used in clinical trials to streamline operational processes, the importance of collaboration and data sharing in advancing the use of technology, and more.
Including Women of Childbearing Age in Clinical Research
March 26th 2024In recognition of International Women's Month, we're featuring this recent talk between Associate Editor Miranda Schmalfuhs and Marie Teil, Global Head of UCB’s Women of Childbearing Age Program. They speak about the specific challenges women with chronic illnesses face when accessing appropriate treatment and participating in clinical trials, UCB's Women of Childbearing Age Program and it’s most successful strategies, and much more.