See Ben Goldacre speaking about the OpenTrials project
Open Knowledge is developing OpenTrials, an open, online database of information about the world’s clinical research trials. We are funded by The Laura and John Arnold Foundation through the Center for Open Science. The project, which is designed to increase transparency and improve access to research, will be directed by Dr. Ben Goldacre, an internationally known leader on clinical transparency.
OpenTrials is building a collaborative and open linked database for all available structured data and documents on all clinical trials, threaded together by individual trial. With a versatile and expandable data schema, it is initially designed to host and match the following documents and data for each trial:
- registry entries
- links, abstracts, or texts of academic journal papers
- portions of regulatory documents describing individual trials
- structured data on methods and results extracted by systematic reviewers or other
- researchers
- Clinical Study Reports
- additional documents such as blank consent forms, blank case report forms, and protocols
The intention is to create an open, freely re-usable index of all such information, to increase discoverability, facilitate research, identify inconsistent data, enable audits on the availability and completeness of this information, support advocacy for better data and drive standards around open data in evidence-based medicine.
The project has phase one funding, allowing us to create a practical data schema, and populate the database initially through web-scraping, basic record-linkage techniques, crowd-sourced curation around selected drug areas, and imports of existing structured and linked data. It will also allow us to create user-friendly web interfaces onto the data, and conduct user engagement workshops to optimise the database and interface designs. The first phase of the Open Trials project is scheduled for completion in March 2017.
Where other projects have set out to manually and perfectly curate a narrow range of information on a smaller number of trials, we aim to use a broader range of techniques and attempt to match a very large quantity of information on all trials. We are currently seeking feedback and additional sources of structured data. Please get in touch with us at [email protected] and follow us on @opentrials
To find out more read this paper.