A total of 475 clinical trials completed in Denmark, Iceland, Finland, Norway and Sweden have never made their results public in any form. In total, 83,903 people participated in those trials, a new report published today shows.
Across all five countries, 22% of all clinical trial results were never made public
Only 27% of all trials results were made public within 12 months of trial completion
There are large differences in performance between individual institutions
Missing results by institution
Institutions can use this dataset to identify their unreported trials, follow up with the researchers involved, and ensure that all results are made public.
Patients and experts call for action
Today, seven patient and health groups call:
On Nordic research institutions - to rapidly make all of their missing clinical trial results public, and to ensure that all results of future trials are made public within 12 months.
On policy makers in all five countries - to adopt national legislation requiring that the results of all clinical trials are made public.
World Health Organisation standards ignored
According to the World Health Organisation, the results of every interventional clinical trial should be made public within 12 months of trial completion.
Non-publication of clinical trial results wastes public money, harms patients and undermines public health. Medical studies that are invisible benefit neither patients nor science: they are research waste. Institutions that fail to ensure that clinical trial results are made public violate medical research ethics and betray the trust of trial participants.
The UK is so far the only country worldwide to systematically tackle the problem.
Quotes from patient and health groups
The report is jointly published by seven organisations: AllTrials campaign, Cochrane Denmark, Cochrane Norway, Cochrane Sweden, Dam Foundation, Melanomföreningen, and TranspariMED.
Fredrik Östman, chairperson of the Swedish patient group Melanomföreningen, said:
“Failure to report results causes a loss of important medical knowledge. Moreover, it is a waste of public and institutional research funding. Even worse: it is a betrayal of patients who have made considerable efforts to participate in trials under the impression that they contribute to medical science."
Jan-Ole Hesselberg, chief program officer of the Norwegian Foundation Dam, said:
“The results are truly shocking. We knew that missing trials were a problem, but my hope was that it had gotten better lately, especially in the Nordic countries. Sadly, this is not the case. Tens of thousands of patients have been exposed to potentially harmful treatments, without us learning anything from it. It is shameful that we still allow this to happen. I believe people would be outraged if they knew how harmful this is.”
Marguerite O’Riordan, advocacy manager of TranspariMED, said:
“National governments have a responsibility to protect patients and ensure that public money is not wasted. Preventing research waste is much cheaper than continuing to squander taxpayers’ money on invisible science. The UK has demonstrated that clinical trials can be systematically tracked nationwide to ensure that all results are rapidly made public, at minimal cost. Political decision-makers need to wake up and fix this broken system.”
Matteo Bruschettini, director of Cochrane Sweden, said:
“Missing information ultimately impacts patients, clinicians and policy makers who need to make decisions based on a distorted picture of the evidence.”
Gustav Nilsonne, lead author of the academic study the report is based on, said:
“When trials go missing we can no longer tell whether treatments help or harm patients. Yet many trials still end up in file drawers and their results never see the light of day.”
Tracey Brown, leader of the All Trials campaign, said:
“Let’s be clear that it is a moral, ethical and regulatory outrage when trials are not published. It betrays trial participants and patients, it wastes precious funds and facilities and it skews the baseline against which new drugs can be evaluated.”
Read the full report
The full report contains details on each institution’s reporting performance, and links to a dataset that institutions can use to follow up on their missing clinical trial results. (The study preprint is separately available on MedRxiv.)
Download the report here: