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The AllTrials campaign. Bring out your unreported trials!

Published: 18 Apr 2017
Category:
By Síle Lane

Clinical trials are at the heart of modern medical research. They are the best means we have of testing whether a medicine is safe and whether it works. Around the world, pharmaceutical companies, universities, government research institutes and medical charities run tens of thousands of trials every year. Some of these trials can involve thousands of patients, take many years to complete and costs hundreds of millions of pounds.
 
So it’s a problem that the results of around half of all clinical trials currently remain hidden1. Results form these trials have never been posted or published anywhere. As a result, a huge amount of medical research goes to waste. Potentially valuable findings are lost, research teams unknowingly duplicate each other’s work, and gaps in knowledge are hard to identify. This has a direct impact on doctors’ and patients’ abilities to make informed choices about treatment options.
 
For example, Saudi Arabian doctor Dr Aus Alzaid discovered that a clinical trial relevant to his patients with diabetes had been conducted years earlier and had shown that a medicine had been linked to an increased risk of dementia, but the trial results had never been made public. As Dr Alzaid said, “In the meantime, millions of people were taking the drug [tested in the trial] and could be at risk of dementia unless the work was published.”
 
The AllTrials campaign calls for all clinical research – past, present and future – to be registered and the methods and results to be fully reported (watch our TEDx video, below2).


Over 700 patient, carer and community support organisations worldwide have joined the campaign. Together, these groups represent more than half a billion people. Leading medical associations including the American Medical Association and the British Medical Association are part of the campaign too, and of course the British Pharmacological Society was one of the earliest groups to stand up and support AllTrials.
 
Working together, this broad coalition has already achieved some major successes. In 2013, GlaxoSmithKline became the first company to make strong public commitments to publish results of its trials. That same year, thousands of AllTrials’ supporters convinced the European Parliament to include laws on trial reporting in the EU clinical trial regulations, and the US Food and Drug Administration also agreed to monitor reporting more closely. In 2015, the World Health Organization called for the public disclosure of all results, past and present, and investment groups and pension funds worth more than €3.5 trillion called on pharmaceutical companies to post trial results. And late last year, in September 2016, the United Nations called on every government around the world to mandate trial reporting.
 
While positive change is happening, it is not happening quickly enough. Every day, missing results are becoming lost results as researchers, and software, retire. If those responsible for trials that haven’t yet been published do not act fast, vast troves of vital medical knowledge will be lost forever.
 
That’s what the AllTrials campaign is focusing on now. Late last year, we launched a roadmap to transparency setting out what doctors, researchers, universities, patient groups, and professional associations can do to help drive forward change3. It includes examples of good practice that’s already happening, such as when the British Pharmacological Society and the American Society for Pharmacology and Experimental Therapeutics announced they would support the publication of negative findings from early clinical trials through their jointly published journal, Pharmacology Research & Perspectives.
 
Meanwhile, AllTrials is rapidly growing into a truly global campaign. National and regional branches recently launched in the United States, Italy, Norway, and Spain-Iberoamerica are amplifying the call for all trials to be registered and all results reported, leading a cultural shift away from the lax reporting practices of the past. Their joint aim is to establish systems of responsibility and accountability that will ensure beyond the life of AllTrials. In the US, nearly 100 medical and patient groups have added their voices and are calling on every other organisation in their sectors to join.
 
However, a shift in research culture and new regulations alone will not be sufficient to uncover all unreported past trials, particularly in academia. The only way to turn this around is to start to pin point trials that remain unreported. AllTrials is going to work with the new suite of tools and trackers (such as TrialsTracker, built by a group at Oxford University) that automatically flag unreported old trials to help trial funders and researchers to identify if they are responsible for trials that need reporting. We’re here to help them get the results out, and we’ll loudly celebrate each new trial that gets uncovered. Join us!
 
Learn more about the AllTrials campaign and get in touch at AllTrials.net

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About the author

Síle is head of international campaigns and policy at Sense about Science (SaS), the charity that promotes understanding and use of scientific evidence and challenges its misrepresentation. She runs the AllTrials campaign for clinical trial transparency, and oversees SaS’s Brussels office, which works to mobilise European citizens and researchers to scrutinise EU policymaking. Síle joined SaS as public liaison in February 2009 to work with patient groups, civic society organisations and medical research charities to promote the tools of scientific thinking and challenge misleading claims. Before this she was a post-doctoral researcher at Imperial College London working on stem cells.