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OPEN Access to Trials Register

Posted by plosmedicine on 30 Mar 2009 at 23:38 GMT

Author: susanne McCabe
Position: retired
Submitted Date: December 02, 2004
Published Date: December 7, 2004
This comment was originally posted as a “Reader Response” on the publication date indicated above. All Reader Responses are now available as comments.

I find the arguments raised very useful as I had not considered that a scientific community would tolerate barring access to registers of trials. It leaves huge gaps for exploitation by priviledged groups.

It is not only collegues in research and allied professions need access but the global community, including members of the public wherever they live, those who participate in trials and those who will be on the receeiving end of their outcomes.

The Annual Reports of Research Ethics Committees are supposedly in the public domain after approval by Strategic Health Authorities in the UK..but very few members of the public know of their existence or how to access them. Approaches to individual committees even now can meet with varied reactions; from suspicious, defensive-hostile,reluctantly sending one, quizzing as to which organisation the enquirer belongs to/why they should want one - to extremely welcoming of interest and discussion.
The Annual Reports should be easily accessible on-line by now surely, but they are not. The activities of RECs and information of what research is being carried out in the name of society as a whole largely remains hidden from public view.

There is no information about public access on COREC (Central Office for Research Ethics Committees) or
OREC (Office for Research Ethics Committees). COREC has not been open about dealing with issues of concern raised with them in the past.They do state that public interest is welcome now ,so it would show a real committment to making research activity more open if they could show support for totally open access to a register and to promote that through their web site.

Competing interests declared: I declare that I have no competing interest but that I do have a longstanding interest in Research and publication ethics