British medical research charities have always been among the pioneers in clinical trial transparency. The AMRC was one of the first organisations to join the AllTrials campaign to get all trials registered and their methods and results fully reported, stating unequivocally that “[c]harities have a duty to put useful research findings into the public domain”.
After all, as the AMRC pointed out at the time:
Clinicians, researchers and regulators all have a need for access to the best available evidence base in order to support high quality research – including preventing duplication and verifying findings - and make decisions about the best treatments.
This video below explains why this issue is so important.
The AllTrials campaign
Fast forward a few years, and more than 700 additional patient groups, professional associations and other organisations have joined the campaign. Thanks to their engagement, policy makers and regulators have begun moving in the right direction.
Over the past few months alone, the United Nations have called on governments to “require” trial registration and reporting, the US Food and Drug Administration has tightened the rules governing clinical trials reporting, and the European Medicines Agency has become the world’s first regulator to proactively release Clinical Study Reports.
In parallel, numerous organisations involved in funding, running, and publishing clinical trials have developed systems, processes and tools to ensure that in future, potentially life-saving medical research will no longer be lost, buried or misreported. The UK is at the cutting edge of many of these innovations.
For example, the Health Research Authority in 2015 conducted a partial audit of trials it had approved to determine publication rates and check the consistency of outcome reporting. Earlier this year, in a world first, two Oxford research centres published an audit of their clinical trial registration and reporting performance; this is an initiative that British medical research charities could replicate.
Building a roadmap
In order to document such promising initiatives and suggest what organisations can do to change things in their sector, AllTrials talked to hundreds of individuals and organisations from around the world, and has now published a roadmap designed to show, clearly and simply, what campaign supporters can do to make the biggest impact.
The world of clinical trial transparency is rapidly changing and evolving, so we will continue updating and expanding this roadmap over the coming months and years. For example, only a few weeks ago, a beta version of the clinical trial search engine OpenTrials went online; we look forward to discovering how British charities will make use of this and other novel tools to promote and further patients’ best interests.
How you can contribute
Today, we would like to invite the UK’s medical research charities to contribute their ideas, expertise and experiences for the next version of this living document.
- Is there any way we could improve the roadmap?
- How can we make it more useful for you?
- Is something important still missing?
- Are you or your organisation pioneering a promising new approach that we should include?
Let’s work together to turn our good intentions into positive results, and move together towards a future in which all clinical trials are registered and their methods and results fully reported.
We look forward to hearing from you!
Author biography: Dr Till Bruckner manages the global AllTrials campaign for greater clinical trials transparency run by Sense about Science, a London-based charity. In the past, he has worked as a freelance journalist and consultant specializing in transparency, corruption and international development. This blog was written in his function as AllTrials campaign manager.