‘AllTrials’ is the brainchild of five different organisations – Bad Science, Sense About Science, BMJ, James Lind Initiative and Centre for Evidence-based Medicine. It aims to benefit patients, researchers, pharmacists, doctors and regulators everywhere, so they can make informed decisions about treatments.
“Currently,” says AllTrials, “drug companies and researchers are allowed to withhold the results of clinical trials from doctors and patients if they wish to, alongside other information. 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.”
AllTrials is calling on several different groups to take action. Key players include the researchers who take part in clinical trials, the pharmaceutical industry, which often funds and ultimately profits from trials, and the regulators who evaluate and supervise the use of medicines. But AllTrials sees a role for several other groups too:
- universities – who should insist on rights of access to data and ensure that contracts between industry and academics allow the academics to publish results
- ethics committees – who should protect patients’ interests by requiring all results to be published and by publicly monitoring and auditing compliance
- medical membership bodies – who should state that withholding results is professional misconduct
- journals – who should consider trials for publication only if the authors commit to making the relevant anonymised patient-level data available on reasonable request.
AllTrials draws attention to the importance of ensuring confidentiality for individual patients who take part in clinical trials. Questions remain over how the findings of clinical trials, and the data on which they are based, can be made accessible to patients, their doctors and others who could benefit from them. Another crucial factor is the pharmaceutical industries’ concern that “releasing commercially confidential information could undermine investment in the research and development of future medicines.” Is this the price of transparency?
AllTrials believes it’s time all clinical trial results are reported. Patients, researchers, pharmacists, doctors and regulators everywhere will benefit from publication of clinical trial results. Wherever you are in the world, they urge you to please sign the petition:
- 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.
- They call on governments, regulators and research bodies to implement measures to achieve this.