Thousands of European clinical trials have not reported their results. This is not only unethical, bad for science and medicine, and a betrayal of the patients who took part in the trials, it is also against European clinical trial reporting rules. It will soon be against the law and punishable by fines.
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.
If you have a relationship with a European academic institution – perhaps you work there, are an alumnus, study there or donate to one – please press them to report missing trial results.
We have written a set of instructions to identify the clinical trials that should have reported results but haven’t for every European institution with trials on the EU Clinical Trials Register. Follow these steps to find unreported trials, write to the institution with details on the trials and ask them how they plan to report the missing results.
- Go to the EU TrialsTracker website.
On the front page you will see some summary information about all EU clinical trials.
2. Scroll down to find the search bar.
3. Enter the name or part of the name of your institution into the search bar. We are using the University of Birmingham as an example here. The institution or a list of the institutions that share some of the name will appear.
For each institution in the list you can see the number of clinical trials it is responsible for on the EU register, the number of those trials that are due to have reported results and the proportion of those that have been reported. There is also a number for the institution’s trials where the data on the EU register doesn’t allow the tracker tool to make a decision about whether the trial is due or not to report or has reported or not.
4. Click on the institution’s name to go to that institution’s page with more details.
In this example, it shows that 63.4% of the University of Birmingham’s clinical trials that should have reported results have reported them.
5. Scroll down and you will find a list of all the institution’s trials. The trials are categorized as DUE TRIALS (ie the tracker tool has used information on the register to assess that the trials are due to have reported results according to the EU rules), NOT DUE, or INCONSISTENT DATA (clinical trials where the information on the register doesn’t allow the tracker tool to categorize it for example if the completion date is missing it is impossible to know whether 12 months have passed since the completion date).
Make sure the DUE TRIALS tab is selected. This will display a list of trials assessed as due to have reported trials. They will be categorized as having Reported results or Not reported.
6. You can click the arrows to the right of the “Status” column title (highlighted in yellow below) to group trials by status.
We are interested in trials that have “Not reported”.
7. Make a note of the Trial ID number and Title for each Not Reported trials (we usually copy and paste the information).
8. Write to your institution with a copy of this information. You might like to explain where you found the information. You should ask for the institution’s plans to get the missing, overdue results reported. You might like to add some words on why this issue matters to you.
As for who you should write to, if you know someone at the institution, do write directly to them. If not you might like to search for the head of research or dean of research or the research office, or write to the head of the institute.
We would appreciate it if you would copy us into the email using email@example.com so that we can see which institutions have been asked. We would like to share stories about how institutions respond to being asked about their missing clinical trial results. If you copy us in you might like to include a few words indicating that you have, such as “I have copied the AllTrials campaign for clinical trial transparency into this message. They are monitoring how institutions respond to being asked about their missing results and may share with campaign supporters that you have been asked and your response.”
- Please let us know what you hear back! Forward responses to firstname.lastname@example.org.