A new report jointly published by the AllTrials campaign, Cochrane Denmark, Cochrane Norway, Cochrane Sweden, the Dam Foundation, Melanomföreningen, and TranspariMED found that 475 clinical trials involving 83,903 patients completed during 2016-19 in Denmark, Iceland, Finland, Norway and Sweden have never made their results public in any form. This accounted for 22% of all clinical trial results across the five countries.

In cases where clinical trial results were made public, there was often a delay in publication. The report found that only 27% of all trials results were made public, in either registries or in journals, within 12 months. Within two years of study completion, only around half of the results were available to the public.

Not only is this lack of transparency in clinical trials a waste of increasingly scarce public funding, it harms patients and leaves gaps in medical evidence. This makes it very difficult to determine how safe and effective treatments actually are.

Nordic countries have recently changed regulations that require institutions to make the results of drug and device trials public on registries within 12 months of completion. While clinical trials which ended in the years prior to 2023 are not included in this legislation, both the Declaration of Helsinki and World Health Organization have clearly stated for years that the timely public sharing of results is an ethical obligation.

Matteo Bruschettini, Director of Cochrane Sweden, who co-authored the report, said:  “At Cochrane we highly value that findings of all studies become available. Otherwise, the synthesis of the evidence misses information thus resulting in misleading conclusions. This ultimately impacts the patients, clinicians and policy makers who need to make decisions based on a distorted picture of the evidence. This report should encourage initiatives to deal with this issue of medical research waste in the Nordic countries.”

The report calls for policy makers in Denmark, Iceland, Finland, Norway and Sweden to adopt national legislation requiring that the results of all clinical trials are made public and to set up monitoring mechanisms. It also calls for national medicines regulators and research funders to put in structures to prevent research waste and ensure that clinical trial results are made public. This is in line with WHO recommendations which urged ethics committees, regulatory authorities, professional bodies, sponsors, investigators, and funding agencies to act in their jurisdictions to ensure results from all clinical trials are reported and publicly disclosed.

The report has already received attention in Swedish media.

Cochrane will continue to advocate for improved clinical trial transparency, and will monitor progress in these countries with interest.