Mary Fitzgerald, Advocate for Access To Medical Data, Washington Post, July 28, 2004. A profile of ClinicalTrials.gov, which today won one of Harvard's Innovations in American Government Awards. Excerpt: "ClinicalTrials.gov was the brainchild of Alexa McCray, director of the Lister Hill National Center for Biomedical Communications, an intramural research division of the National Library of Medicine at the National Institutes of Health. Taking the lead from the Food and Drug Administration Modernization Act 1997, which called for the establishment of a clinical trials registry that would be available to the public, McCray turned to the Internet to ensure an accessible and user-friendly resource for everyone from patients to health care professionals. Since its inception in February 2000, the federally funded database has been embraced by millions of people trying to pick their way through the often byzantine world of clinical trials....'I really believe that patients have the right to this kind of information, whether it's clinical trials data or the latest literature on medical breakthroughs or just getting a better understanding of some condition that you or a family member suffers from,' [McCray] said....Over the last two years, about 250 drug companies have registered with ClinicalTrials.gov, putting about 1,300 trials on the site, McCray said. She said she believes mandatory registration would lead to more effective research. 'It would go very far in ensuring transparency in the whole clinical research enterprise,' McCray said. "If you knew that a particular trial had taken place, you could track down what happened, and you could do better meta-analyses and systematic reviews. I believe patients have the right to know what's going on, because after all they have volunteered to participate in such an experiment and have perhaps put themselves at risk."
Update. The NIH press release on the Innovations in American Government Award is now online.
Posted by
Peter Suber at 7/28/2004 01:42:00 PM.
The open access movement:
Putting peer-reviewed scientific and scholarly literature
on the internet. Making it available free of charge and
free of most copyright and licensing restrictions.
Removing the barriers to serious research.
I recommend the OA tracking project (OATP) as the best way to stay on top of new OA developments. You can read the OATP feed on a blog-like web page or subscribe to it by RSS, email, or Twitter. You can also help build the feed by tagging new developments you encounter.
