Around half of all clinical trials that have been carried out on medicines we use today have never published results. That means that researchers are missing opportunities to explore new areas of research and doctors don’t have access to information they need to be sure they are making the best choices for patients.
Researchers have known about the problem of missing clinical trial results for four decades but nothing much happened to fix the problem until the launch of the AllTrials campaign in 2013. The campaign calls on every person and organisation that has a role in clinical trial reporting to take what steps they can to solve the problem in their own sector. Publishers – organisations who play a key role in disseminating information from research – have been a central part of the campaign. After all, as Taylor & Francis Group said when the organisation joined the campaign:
As a publisher of medical research which stretches across therapy areas, we aim to lead in establishing the most transparent and ethical publication processes across all our medical journals. Pledging our support to the AllTrials campaign is an extension of our commitment to this, and we will be working with our partners, whether researcher, health professional or association, to promote and embed the campaign’s aim of greater transparency in clinical reporting throughout our publishing activity.
More than 700 patient groups, professional associations and other organisations have now joined the campaign. Thanks to their engagement, policy makers and regulators have begun moving in the right direction. The United Nations have now 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 May 2017 some of the largest funders of clinical trials in the world, including the Bill and Melinda Gates Foundation and Medicines Sans Frontier, committed to strong policies to ensure all their trials are registered and results reported.
What can you do?
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. In order to document promising initiatives and suggest what organisations can do to change things in their sector, AllTrials has 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. 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.