The award winning science writer and physician Ben Goldacre recently launched a major campaign to open up the results of clinical trials.
The AllTrials initiative calls for all clinical trials to be reported and for the “full methods and the results” of each trial to be published.
Currently negative results are poorly recorded and positive results are overhyped, leading to what Goldacre calls ‘research fraud’, misleading doctors about the drugs they are prescribing and misleading patients about the drugs they are taking.
The Open Knowledge Foundation is an organisational supporter of AllTrials, and we encourage you to sign and share the petition if you have not already done so:
There have been some big wins in the past 48 hours. The lead legislator for a new EU Clinical Trials Regulation recently came out in favour of transparency for clinical trials. Today GlaxoSmithKline announced their support for the campaign, which, as Goldacre says, is “huge, and internationally huge”.
As well as continuing to push for stronger policies and practises that support the release of information about clinical trials, we would like to see a public repository of reports and results that doctors, patients and researchers can access and add to. We need an open database of clinical trials.
Over the past few days we’ve been corresponding with Ben and others on the AllTrials about how we might be able to work together to create such a database – building on the prototyping work that was presented at last year’s Strata event.
In the mean time, you can watch the TED talk if you haven’t seen it already – and help us to make some noise about the petition!
Dr. Jonathan Gray is Lecturer in Critical Infrastructure Studies at the Department of Digital Humanities, King’s College London, where he is currently writing a book on data worlds. He is also Cofounder of the Public Data Lab; and Research Associate at the Digital Methods Initiative (University of Amsterdam) and the médialab (Sciences Po, Paris). More about his work can be found at jonathangray.org and he tweets at @jwyg.
4 thoughts on “We Need an Open Database of Clinical Trials”
For such a clinical trial database – checkout http://cdisc2rdf.com/ including semantic web versions of submission standards for trial summary parameters domain and controlled terms (CDISC SDTM TS). Also, the FDA CDER/CBER have recognised the value of semantic web standards, see http://www.fda.gov/Drugs/DevelopmentApprovalProcess/FormsSubmissionRequirements/ElectronicSubmissions/ucm332003.htm and the position paper from W3C HCLS behind the presentation at that meeting http://www.w3.org/2012/Talks/1105-egp-CDER/FDA-v2.pdf
I think that we should also have an open register where anyone can log an adverse event that they have had from a medication, a prophylactic treatment such as immunisation, or from the use of a medical device.
I’ve started a git datasets repo for the existing (published) US clinical trials data (as per FDAAA 801) https://github.com/datasets/clinical-trials-us
What are the risks of clinical trials salt lake city, ut does some and I’m considering if it’s worth it to me. Would the risks depend on what the trail is for?
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