AMRC supports campaign for all trials to be registered and results reported

Posted on February 8, 2013 by

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AMRC has today supported the All Trials Registered, All Results Reported campaign.

This campaign calls for action to ensure all clinical trials are registered and their results reported.

Thousands of clinical trials have not reported their results; some have not even been registered.

Information on what was done and what was found in these trials could be lost forever to doctors and researchers, leading to bad treatment decisions, missed opportunities for good medicine, and trials being repeated.

All trials past and present should be registered, and the full methods and the results reported.

We call on governments, regulators and research bodies to implement measures to achieve this.

We have made a statement explaining our support:

Medical research charities support the registration of clinical trials and the publication of findings.

Medical research charities aim to improve healthcare for patients. Many are able to do this because the public choose to donate their money to support research. Seventy-two percent of people tell us they want the opportunity to be involved in trials of new treatments. Patients want to take part in clinical trials so that the data generated can be used to improve treatment for others in the future as well as hoping treatments will benefit them personally. And for clinical research to benefit patients, the findings must be made available for others to learn from them.

Supporters of charities have a right to expect that their donations will fund research that will benefit patients and the public. Charities have a duty to put useful research findings into the public domain and our longstanding advice to all AMRC members is to include a requirement to publish (within a reasonable time frame) in the terms and conditions of their awards. Our members are increasingly developing research evaluation systems which will allow them to audit compliance with this.

We recognise that there are practical challenges that need to be addressed to ensure all findings, including the underlying data, are accessible. Significant progress is being made in creating an efficient system for setting up and running clinical studies in the UK, and we are keen that mechanisms to improve transparency would build on this following robust impact assessments. We are working with the rest of the medical research community to address these issues.

Please see our briefing for further information.

And this briefing gives more background on best practice for AMRC members and the legislative requirements in this area.

What is AMRC doing?

Charities have a duty to put useful research findings into the public domain and our longstanding advice to all AMRC members is to include a requirement to publish (within a reasonable time frame) in the terms and conditions of their awards.

We are working with our members to review practices and discuss whether charities funding clinical trials can take further steps to audit publication of results and ensure their terms and conditions are complied with. Many of our charities are developing research evaluation systems which will allow them to follow-up the impact of research they have funded.

We are engaging with the wider medical research community to improve access to clinical trial data and findings.

We are also working with a coalition of commercial and non-commercial medical research funders to ensure the new EU Clinical Trials Regulation supports greater transparency. Clinical trials are conducted across the world, so actions to increase transparency and improve healthcare need to be taken on a global scale.

Posted in: Policy