The Oransky Journal

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How do — and should — reporters use ClinicalTrials.gov?

with 4 comments

ct.gov-logoI have the privilege of speaking at a Friends of the National Library of Medicine (NLM) workshop on public access to clinical trials in a few weeks. I’ve been asked to discuss how reporters can use ClinicalTrials.gov, the NLM-run registry and results database, how they might use it better, and what sorts of improvements might help make the resources available there easier to use.

I’d like to hear, in comments or by email to ivan-oransky [at] erols.com, ideas from my readers. I’m starting with just a few of my own:

  • Reviewing study data
  • Finding trials in your own area
  • Seeing how many trials of a particular compound were started, to give context when a new study is published or announced at a conference
  • Comparing published endpoints to originally planned protocols

So, reporter colleagues, how do you use the database? What improvements do you wish for? Maybe some of those who’ve participated in the Association of Health Care Journalists-NLM fellowship can weigh in. And what ideas do non-reporters have about how journalists could use ClinicalTrials.gov better?

Thanks in advance.

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Written by Ivan Oransky

May 28, 2013 at 10:06 am

Posted in Uncategorized

4 Responses

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  1. First, let me say that I could and should use it more. But I check the registrations of published trials to learn about the sites where the work was done and the protocol revisions along the way. It’s also sometimes helpful to see the previous trials of a drug and the other indications being explored or ones that were abandoned. I’m vowing to use alerts more often. I feel dumb for not doing that last year when I was interested in figuring out when Johnson & Johnson’s Janssen division was gearing up to test ketamine and esketamine for depression. I could have done a story when it was fresher.

  2. The obvious one is this: looking for trials that have completed but not reported results. The FDA Amendment Act 2007 that was supposed to fix this has been widely ignored.

    There’s a big international campaign on this (COI: I am co-founder) here:

    http://www.alltrials.net

    Background information:

    http://www.alltrials.net/wp-content/uploads/2013/01/Missing-trials-briefing-note.pdf

  3. There’s a great use of Clinical Trials for reporters: you can verify that the findings in a paper you want to report on were actually something that the investigators originally set out to study. If study results focus only on secondary outcomes, almost certainly the primary outcomes failed.

    Pete Schmidt

    May 28, 2013 at 10:58 am

  4. A lot of my better stories have come from clinicaltrials.gov. It used to be that not registering a trial could be a source of a story. As a result this seems less likely to happen. It’s wonderfully useful for seeing if a trial has been changed.

    But it’s too hard to search for instances where trials have been recently updated. Making it more easy to search for trials that have, say, been stopped or had major changes in the past year would open up new areas of easy journalism. The issue of trials not posting results has become so pervasive that I’m not sure a story saying results aren’t posted would be newsworthy. It’s so easy to not post results that it’s not clear what not posting means, whereas when studies were not even listed it clearly indicated a company was hiding something.


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