The AllTrials campaign continues to grow but more needs to be done to achieve full transparency

Written by Ian Bushfield on . Posted in Features

A lot has happened since the last time we wrote about the progress of the AllTrials campaign. In April, Members of the European Parliament voted overwhelmingly in favour of a law that will require all clinical trials to be registered and results reported. Now 80,000 people and 500 organisations have joined the AllTrials campaign for clinical trial transparency (the Royal Statistical Society signed the petition last year) and those numbers are growing all the time.

Adam, a nurse and recent graduate, wrote to the principal of his university to ask them to join AllTrials. The board agreed and the University of Edinburgh became the first university in Scotland to join the campaign. Marty, a clinical assistant professor, has been giving talks and lectures about AllTrials and has asked East Carolina University to join. In Canada, students at Dalhousie University started a student society to raise awareness and work towards clinical trial transparency there.

To help other people like Adam, Marty and the Dalhousie students, we launched a new website in May, which now has a lot more information about the campaign, things you can do now and regular news updates. Our campaign video came out on International Clinical Trials Day, May 20. The video gathers together the voices of patients, doctors, campaigners and pharmaceutical companies to say why we must make clinical trials count. It is in response to the people around the world who want to build the campaign in their own country. The video was made possible by the donations of 600 people and RCVS Knowledge and, thanks to many wonderful volunteers, it has been subtitled in 20 different languages.

These new materials are helping people spread the word internationally. Members of the Iberoamerican Cochrane Centre are asking scientific societies and patient organisations in Spain to join AllTrials and will work with their colleagues at Cochrane Centres across Central and South America to reach out to organisations there. They are also collaborating with organisations in Spain and Latin America that already support the campaign to work out what needs to change and how they can do it.

We’re also excited to see larger organisations coming on board and thinking about what their role in clinical trial transparency is. When Elsevier, one of the world’s largest scientific and medical publishers, joined AllTrials recently they began exploring how they can embed clinical trial registration in the peer review process. They will track trials, create new rules for authors and work with other publishers to develop new industry standards.

Last year the Health Research Authority (HRA) in the UK consulted on making failure to register a breach of ethics approval. Responses from individuals and organisations who support AllTrials were central to the HRA adopting this proposal. Now it’s consulting on plans to require trial sponsors to make a declaration that all of their trials since September 2013 have been registered including all ongoing trials. We want to make sure that all groups, including academia, patient organisations and research funders are heard as well as industry voices. You can add your comments in support of the HRA’s proposals until the end of July.

As more organisations and people write and talk about AllTrials, some companies are starting to provide access to their clinical trial data. GSK built an online system to allow researchers to access clinical trial information. Johnson and Johnson handed all their clinical trial data to researchers at Yale University's Open Data Access Project for independent scrutiny and Bristol-Meyers Squibb will allow independent scientists access to data from their trials going back to 2008 through a collaboration with Duke University.

But it hasn't been plain sailing and we’re aware that some parts of industry have been pushing back. A leaked letter from the US industry body the Pharmaceutical Research and Manufacturers of America trade group said transparency 'risks damaging public health and patient welfare'. And the European Medicines Agency (EMA) was set to U-turn on some of its welcome proposals to proactively publish clinical study reports after settling lawsuits with two pharmaceutical companies who sought to keep clinical trial data hidden. After hundreds of letters from AllTrials supporters, the EMA reinstated some of its original proposals.

We still need your help. Please sign the AllTrials petition and tell others to, share our campaign video, write about it, ask your organisation to join and keep talking about clinical trial transparency.

 

The views expressed in the Opinion section of StatsLife are solely those of the original authors and other contributors. These views and opinions do not necessarily represent those of The Royal Statistical Society.

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