Two of the largest pharmaceutical industry trade bodies plan to mobilise patient groups in the debate on clinical trial transparency, the Guardian reports today. A leaked memo from the European Federation of Pharmaceutical Industry Associations (EFPIA) and the Pharmaceutical Research and Manufacturers of America (PhMRA) sets out their strategy, which begins with “mobilising patient groups to express concern about the risk to public health by non-scientific re-use of data.”
GSK and Roche have distanced themselves from the industry bodies’ strategy, according to the Guardian article. Tracey Brown from Sense about Science, a co-founder of AllTrials, said “We now have the prospect of really significant developments to end the secrecy and make clinical trial reporting a practical reality and, finally, some sound commitments from parts of industry. In this context, the industry associations’ strategy to get others to raise further spurious problems is backward. It should embarrass anyone associated with it. I would say to the individual companies that they should publicly distance themselves from any association with EFPIA and PhRMA’s strategy now.”
More than 150 patient groups have already joined the AllTrials campaign. The industry should be engaging with the concerns these groups are raising. We think the best answer to EFPIA and PhRMA’s strategy is to have thousands more people sign up to AllTrials and for organisations and patient groups across Europe and the US to say they won’t be a part of it.
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We have asked all pharmaceutical companies to confirm whether or not they support the strategy of EFPIA and PhRMA. We will be updating this page with responses.
Patient groups have responded to the leaked strategy.
Mail Online: Drug companies could be forced to publish secret research to stop them hiding dangerous and unknown side-effects.
EurActiv: Pharma industry tries to mobilise patient groups in clinical trials battle.
PharmaTimes: Pharma pushes patients to speak up against data disclosure.
PharmaTimes: Patient groups commit to transparency after leaked memo.
PMLive: Leaked EFPIA memo reveals transparency strategy.