Outdated registry information makes it hard for patients to join clinical trials
People ask us… “Why don’t you have a trial search tool on your website?”
Well, our simple answer is, we would have IF we believe there was good, comprehensive (all trials), current information available from the register to enable one.
And here is why we know the data is not current. When we search the Australian New Zealand Clinical Trials Registry (ANZCTR), we search for trials with a status of ‘recruiting’ and with a trial start date since the previous search date. And on average, we are find about 10-20 trials per month newly recruiting.
Here’s the problem. In Australia, statistics inform us that about 1000 trials start each year in Australia. So our search should be finding 80-100 trials per month, give or take, which is a long way short of what we are finding on the register.
So, for the moment, we share the places people can look on our FIND TRIALS page, and continue to provide a manually created list of trials recruiting each time we send out our newsletter. This list is created by a very manual process, but is part of our commitment to increasing awareness of the types of research projects looking for participants.
Researchers aren’t always updating the register when they start recruiting, or it would seem, when recruitment closes. If you look at our experience, you might suggest as many as 80% aren’t keeping the register current.
So, in line with our recommendations from the Think Tank, we would once again like to send a call to action to all trial sponsors and researchers using the Australian New Zealand Clinical Trials Registry:
Please keep the register current.
Quite frankly, this is the easy, low-hanging fruit, for trial recruitment, especially when so many recruitment solutions are using the information from trial registers to help inform and match patients to trials.
People can’t know about trials if you don’t tell them are recruiting.
The guest blog above is a shortened version of a post first published on the website of Research4Me, an Australian social enterprise whose mission is to "speed up access to better treatments by making sure people are empowered with a knowledge of clinical trials and how to get involved". Reproduced here with the kind permission of the Research4Me team.
Universities that want to improve their clinical trial transparency can use TranspariMED's collection of transparency tools to strengthen their policies, processes and performance.