One of the world’s largest medical research charities is now following up with the researchers it supports to ensure that they register clinical trials and make their results public.
Cancer Research UK, which is largely financed by donations from the general public, spends close to half a billion Euros every year on research into new cancer treatments.
Last year, the charity started checking up on all clinical trials it had funded that were completed between 2012 and 2018, a total of 85 trials.
It found that with one possible exception, all 85 trials had been registered.
CHASING UP MISSING TRIAL RESULTS
On the reporting side, the picture was more mixed. According to the monitoring report:
“Of the 85 trials analysed, 56 had results reported on the registry, or had published in a journal, abstract, poster or presentation, quoting their trial registry ID.”
While a reporting rate of only 66% sounds depressing, the overall picture is likely to be more positive because Cancer Research UK applied very strict criteria: If a trial publication did not include the registry ID number, it was counted as not reported.
Nonetheless, a minority of trials had remained completely unreported, as the charity’s monitoring report makes clear:
“In some cases, [clinical trial units] provided reasons why trials had not yet been reported. These included comment on analysis still taking place and registers being updated to state that results are unavailable.”
“Whilst some of the unreported studies had some justification, this was not universal, and it is clear more must be done to ensure that the results of trials are made available at the earliest opportunity.”
PUSH FOR TRANSPARENCY TO CONTINUE
Cancer Research UK promised a sustained effort to further improve grantees' reporting practices:
“To address the number of unreported trials, we will be working with our grantholders and infrastructure to determine reasons for lack of reporting and work with them to remove any barriers to reporting to improve compliance.”
“We’re committed to ensuring a high level of registration and reporting of funded and endorsed trials and will be reporting compliance with these requirements on an ongoing annual basis.”
WHAT ARE OTHER RESEARCH FUNDERS DOING?
The Wellcome Trust, the Medical Research Council and the National Institute for Health Research are already publishing similar annual monitoring reports.
In 2017, other major funders, including the Gates Foundation, the Indian Council of Medical Research, and Dutch ZonMW also promised to produce monitoring reports but have so far failed to deliver.
Till Bruckner, founder of TranspariMED, said:
“Cancer Research UK’s monitoring efforts give assurance to patients volunteering in trials that their contribution will make a difference, and to people donating to research charities that their money will not be wasted.”
“Medical research can only improve patient care if its results are made public. Cancer Research UK’s monitoring work and follow-up with grantees sets an excellent example that all other research funders should follow.”
Cancer Research UK’s monitoring report can be found here.
Note on ID numbers: According to WHO best practices and a the widely accepted CONSORT reporting standard, researchers should always include trial ID numbers in their publications because it makes trial results easier to find and encourages more accurate reporting of results. Including the number only takes two minutes, but researchers sometimes forget to do it, and many journals fail to flag this omission during peer review.