[okfn-advisory] OpenTrials project [Confidential]

Carolina Rossini carolina.rossini at gmail.com
Thu Mar 19 19:44:04 UTC 2015

So, if I understand correctly this is to ensure transparency in industry
run clinical trials for products that get submitted for government
approval, including failures ? Awesome!
Great project! Ben Goldacre is amazing. Great partnership.

On Thu, Mar 19, 2015 at 3:17 PM, Peter Murray-Rust <pm286 at cam.ac.uk> wrote:

> This is wonderful [I had hints of it but kept my mouth shut]. I'm working
> very heavily in this area and spent Monday at UKCochrane in Oxford where we
> (Contentmine.org) ran a 1-day workshop - Ben was there for the day and we
> had a great deal to talk about and I will be very happy to bring
> Contentmining to OpenTrials.
> That links onto another success [also not formally signed off so please
> keep quiet], also with OK(FN). Contentmine is part of a H2020 project
> FutureTDM and we asked OK to partner with us and Sander vdW is running this
> from the OK point of view (Jenny Molloy and I represent Contentmine.)
> There is therefore a lot of synergy and I'm delighted to do whatever is
> useful.
> P.
> On Thu, Mar 19, 2015 at 11:14 AM, Denis Parfenov <denis.parfenov at gmail.com
> > wrote:
>> Dear Rufus -
>> Thank you for sharing exciting news. There is no doubt that such project
>> will not only improve lives, but also save them.
>> I did work for one of the Irish medical trial companies which collected
>> data on behalf of major pharma companies and have a clear understanding
>> what's in stake and what we are facing. Many of "big pharma" run their
>> trials out of Ireland and increasingly using countries like India as their
>> testing ground, taking advantage of poor and poorly educated people
>> (informative piece on this subject from AlJazeera here
>> <http://www.aljazeera.com/programmes/faultlines/2011/07/2011711112453541600.html>
>> )
>> We are really looking forward to hear more about this initiative and to
>> play a part in it.
>> Best regards,
>> Denis
>> --
>> Denis Parfenov
>> Open Knowledge Ambassador / Open Knowledge Ireland, Founder
>> <https://openknowledge.ie/>
>> https://openknowledge.ie/  | @OKFirl <https://twitter.com/OKFirl> |
>> Google+ <https://plus.google.com/u/0/communities/106119681022861607353>
>> *'Open minds to open actions'*
>> m: +353863850044 | @prfnv <https://twitter.com/prfnv> [.org
>> <http://prfnv.org/>]
>> On 19 March 2015 at 09:01, Panagiotis Bamidis <bamidis at med.auth.gr>
>> wrote:
>>> Dear Rufus,
>>> this is very good news and sounds very exciting indeed! It is very
>>> relevant to on going work we have initiated here at OKF Greece and the
>>> Medical School of the Aristotle University of Thessaloniki. In fact given
>>> the large number of trials we have been doing since 2006 with new
>>> technologies in active and healthy ageing trials as well as affective
>>> neuroscience trials. Our plans were to start open the data so as for the
>>> (insensitive) results to be widely available to those that could exploit
>>> them semantically. As some of those trials involve the production of huge
>>> datasets (with sensors and gaming alike the Quantified Self initiative)
>>> opening them becomes very pivotal to our understanding.
>>> So many thanks for sharing this info with us and please keep us
>>> informed. We are happy to contribute into this if there is a need.
>>> Best regards
>>> Panos
>>> Panagiotis D. Bamidis
>>> Assist. Prof.,
>>> Medical School,
>>> Faculty of Health Sciences,
>>> Aristotle University of Thessaloniki,
>>> PO Box 376, 54124, Thessaloniki, Greece
>>> --
>>> tel: +30-2310-999310
>>> fax: +30-2310-999702
>>> mobile: +30-6972-008122
>>> email: bamidis at med.auth.gr
>>> On 19 March 2015 at 09:43, Rufus Pollock <rufus.pollock at okfn.org> wrote:
>>>> Hi All,
>>>> I wanted to let everyone know about an exciting new project OpenTrials
>>>> that we are doing in collaboration with Ben Goldacre and the Centre for
>>>> Open Science funded by the Arnold Foundation.
>>>> Whilst funding has now been signed off we have not yet done the
>>>> official first announcement so this is still confidential but I wanted to
>>>> give the Advisory Council an early heads-up - especially as I know some
>>>> members such as Peter are themselves directly interested in this.
>>>> Draft PR is below.
>>>> Regards,
>>>> Rufus
>>>> Open Trials: offering  increased transparency around clinical trials
>>>> Open Knowledge is pleased to announce that it has been awarded a grant
>>>> by the Arnold Foundation via the Centre for Open Science to work with Ben
>>>> Goldacre to produce ‘Open Trials’ which will begin work on a comprehensive
>>>> open database of clinical trials results and associated information.
>>>> The principal investigator for this project, Dr Ben Goldacre, is a
>>>> Clinical Research Fellow in the Centre for Evidence Based Medicine at the
>>>> University of Oxford.  Ben Goldacre said: “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. This project aims to  draw
>>>> together everything that is known around each clinical trial. The end
>>>> product will produce 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.”
>>>> Rufus Pollock said, “This is an incredible opportunity to identify
>>>> which trial results are currently being withheld and to improve advocacy
>>>> work around trial results. This is a perfect example of a project where
>>>> opening up data and presenting in a usable form will have a direct impact -
>>>> literally saving 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 the Arnold Foundation to do this
>>>> ground-breaking project.”
>>>> The Open Trials project will produce an open, easy-to-use database of
>>>> information about the world’s clinical trials to improve access to research
>>>> and increase transparency. Patients, doctors, researchers and policymakers
>>>> use the evidence from clinical trials to make informed decisions about
>>>> which treatment is best. But the best currently available evidence shows
>>>> that around half of all clinical trial results are not published, with
>>>> positive results twice as likely to be published as negative ones. In
>>>> addition, much important information about the methods and results of
>>>> clinical trials is only made  available outside the normal indexes of
>>>> academic journals.
>>>> Open Trials will will aggregate information from a wide variety of
>>>> existing sources and will crowdsource additional information to provide a
>>>> comprehensive picture of the effectiveness of the world’s medicines, and to
>>>> monitor the transparency of essential information about clinical trials
>>>> that should be made available to the public to assess the safety and
>>>> effectiveness of a given treatment.
>>>> It will help to automatically identify which trial results are
>>>> currently being withheld, by matching registry data on trials that have
>>>> been conducted against documents containing trial results. This will
>>>> facilitate routine public audit of withheld results.  It will also enable
>>>> more effective and coordinated advocacy around full reporting for all
>>>> clinical trials, highlighting poor transparency and increasing pressure on
>>>> legislators to improve regulation. It will also improve discoverability of
>>>> other documents around clinical trials, which will be indexed and in some
>>>> cases hosted. Lastly, it will help recruitment for clinical trials, by
>>>> making information and commentary on ongoing trials more accessible.
>>>> The first phase of the project will complete in March 2017.
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> --
> Peter Murray-Rust
> Reader in Molecular Informatics
> Unilever Centre, Dep. Of Chemistry
> University of Cambridge
> CB2 1EW, UK
> +44-1223-763069
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*Carolina Rossini *
*Vice President, International Policy*
*Public Knowledge*
*http://www.publicknowledge.org/ <http://www.publicknowledge.org/>*
+ 1 6176979389 | skype: carolrossini | @carolinarossini
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