[okfn-discuss] New project announcement: Open Trials

Wed Apr 22 12:00:14 UTC 2015

Dear all,

Please find below a new project announcement that was circulated yesterday
to press about Open Trials, an exciting new Open Knowledge project led by
Ben Goldacre, with funding from the Laura and John Arnold Foundation, in
partnership with the Center for Open Science.

We very much encourage you to register your interest in the project via the
Open Trials website, here <http://opentrials.net/> and to follow @opentrials
<https://twitter.com/opentrials> on Twitter.

We are looking forward to engaging with you on this work as the project
progresses.

Emma Beer

Open Trials: Open Knowledge announces plans for open, online database of
clinical trials

21 April 2015 - For immediate release

Open Knowledge today announced plans to develop Open Trials
<http://opentrials.net/>, an open, online database of information about the
world’s clinical research trials funded by the Laura and John Arnold
Foundation. The project, which is designed to increase transparency and
improve access to research, will be directed by Ben Goldacre, an
internationally known leader on clinical transparency.

Open Trials will aggregate information from a wide variety of existing
sources in order to provide a comprehensive picture of the data and
documents related to all trials of medicines and other treatments around
the world. Conducted in partnership with the Center for Open Science and
supported by the Center’s Open Science Framework, the project will also
track whether essential information about clinical trials is transparent
and publicly accessible so as to improve understanding of whether specific
treatments are effective and safe.

“There have been numerous positive statements about the need for greater
transparency on information about clinical trials, over many years, but it
has been almost impossible to track and audit exactly what is missing,” Dr.
Goldacre, the project’s Chief Investigator and a Senior Clinical Research
Fellow in the Centre for Evidence Based Medicine at the University of
Oxford, explained.  “This project aims to draw together everything that is
known around each clinical trial. The end product will provide valuable
information for patients, doctors, researchers, and policymakers—not just
on individual trials, but also on how whole sectors, researchers,
companies, and funders are performing. It will show who is failing to share
information appropriately, who is doing well, and how standards can be
improved.”

Patients, doctors, researchers, and policymakers use the evidence from
clinical trials to make informed decisions about which treatments are best.
But studies show that roughly half of all clinical trial results are not
published, with positive results published twice as often as negative
results. In addition, much of the important information about the methods
and findings of clinical trials is only made available outside the normal
indexes of academic journals.

“This project will help to shed light on both good and bad practices by the
sponsors of clinical trials,” Stuart Buck, LJAF Vice President of Research
Integrity, explained. “If those sponsors become more transparent about
their successes and failures, medical science will advance more quickly,
thus benefitting patients’ health.”

"We are thrilled to partner with Open Knowledge on the use of the Open
Science Framework (OSF) for this project.  Open Trials is a great example
of how the free, open source OSF infrastructure can be utilized by the
community in different ways to increase transparency in scientific
research," Andrew Sallans, Center for Open Science Partnerships Lead,
explained.

Open Trials will help to automatically identify which trial results have
not been disclosed by matching registry data on trials that have been
conducted against documents containing trial results. This will facilitate
routine public audit of undisclosed results. It will also improve
discoverability of other documents around clinical trials, which will be
indexed and, in some cases, hosted. Lastly, it will help improve
recruitment for clinical trials by making information and commentary on
ongoing trials more accessible.

“This is an incredible opportunity to identify which trial results are
being withheld,” Rufus Pollock, President and Founder of Open Knowledge,
explained.  “It is the perfect example of a project where opening up data
and presenting it in a usable form will have a direct impact—it can
literally save lives. We’re absolutely delighted to partner with Ben
Goldacre, a leading expert and advocate in this space, as well as with the
Center for Open Science and LJAF to conduct this groundbreaking work.”

The first phase of the Open Trials project is scheduled for completion in
March 2017.  For project updates, please follow @opentrials
<https://twitter.com/opentrials> on Twitter.com.

[image: logo-black.png]

[image: OpenKnowledge_LOGO_COLOUR_RGB.png]

[image: cos.jpg]

ENDS

Contact: opentrials at okfn.org opentrials.net

Editor’s notes

Ben Goldacre

Ben Goldacre is a doctor, academic, campaigner and writer whose work
focuses on uses and misuses of science and statistics. His first book Bad
Science reached #1 in the UK non-fiction charts and has sold over half a
million copies worldwide. His second book Bad Pharma discusses problems in
medicine, focusing on missing trials, badly designed research, and biased
dissemination of evidence. His third book, a collection of journalism and
papers, was published in 2014. He wrote the Bad Science column for a decade
in the UK Guardian newspaper, and has written for the Times, the Telegraph,
the Mail, the New York Times, the BMJ, and more, alongside presenting
documentaries for the BBC.

In policy work, he is co-author of a 2012 UK government Cabinet Office
paper on getting more randomised controlled trials on policy questions;
conducted an independent external review in 2012 for the Department For
Education on how to improve the use of evidence in teaching; and is
co-founder of AllTrials, a campaign by doctors, academics, funders,
pharmacists, professional bodies, patients and the public, to prevent trial
results being withheld. His non-profit company Better Data has built
Randomise Me, an open trials platform for the general public, and he has
worked on various health IT projects such as prescribinganalytics.com and
openprescribing.org. Ben is currently a Senior Clinical Research Fellow in
the Centre for Evidence Based Medicine at the University of Oxford. His
blog is at www.badscience.net and he is @bengoldacre
<https://twitter.com/bengoldacre> on twitter.

Open Knowledge

https://okfn.org

http://opentrials.net

Open Knowledge is a worldwide non-profit network of people passionate about
openness, using advocacy, technology and training to unlock information and
enable people to work with it to create and share knowledge.

Center for Open Science

http://centerforopenscience.org

COS is a non-profit technology company providing free, open source software
and services to increase inclusivity and transparency of research. COS
supports shifting incentives and practices to align more closely with
scientific values.  COS develops the Open Science Framework <http://osf.io/>
as an infrastructure to enable a more open and transparent research
workflow across all of the sciences.

The Laura and John Arnold Foundation

LJAF is a private foundation committed to producing substantial,
widespread, and lasting reforms that will maximize opportunities and
minimize injustice in our society. Its strategic investments are currently
focused on criminal justice, education, public accountability, and research
integrity. LJAF has offices in Houston and New York City.
www.arnoldfoundation.org

-- 

Emma Beer

Senior Project Manager |Skype: emma.beer  |  tel: +44 07921 426 523

The Open Knowledge Foundation <http://okfn.org/>

*Empowering through Open Knowledge*

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