OpenTrials is building an open, linked database of information about clinical trials from around the world to address issues with the current fragmented and incomplete state of clinical trial data. This includes trials not being published, results being misreported or reported differently in different places, and a lack of a single source of trial information and data. OpenTrials is compiling trial data from various registries and through donations, crowdsourcing, and scraping to create a comprehensive database that researchers, doctors, patients, journalists, and developers can use. They are looking for partners to help fund, provide data to, and test their developing platform.

1. An open, linked database of information about the world's
clinical trials
Ben Meghreblian, Community Manager

2. Clinical trials - a quick overview (1/2)
● Testing treatments
● Pharmaceutical, psychological, medical devices
● Industry and academia
● Results used to make healthcare decisions
○ Regulators, policy makers, doctors, and healthcare professionals
BUT...
opentrials.net

3. Clinical trials - a quick overview (2/2)
● Messy information architecture/knowledge management
● Not all trials published -> biased view of literature
● Results misreported in academic journals
● Results reported differently in different places
● Journal articles less complete than other sources (CSRs)
● Other documents contain important info
● No one place where info/data is located + poor cultural norms re: sharing/transparency
SO...
opentrials.net

4. OpenTrials overview
opentrials.net

5. How are we building it?
● 3 ways
○ Scraping registries
○ Donations of structured data
○ Crowdsourced document contributions
opentrials.net
335,032 deduplicated trials
ClinicalTrials.gov 223,317
EU CTR 28,685
WHO ICTRP 320,430

6. Who will use it?
● Researchers
○ range of trials on a drug/disease area
● Doctors
○ critical appraisals of research papers
● Patients
○ enroll or check for results
● Data journalists
○ interesting data driven stories
● Developers
○ build applications on top of the OpenTrials API
opentrials.net

7. opentrials.net

8. Get involved!
● Looking for:
○ Data partners
■ structured data (PhD, publication bias/systematic reviews), mapping terms
○ Funding partners
■ prioritise drug/disease area, funding, in-kind resources
○ Community partners
■ patient groups, trial sponsors, orgs that use/generate/contribute data
○ Individual partners
■ data sources, data sets, data cleaning
○ Users
■ user testing, early platform/data access, feature requests
opentrials.net

9. OpenTrials team
● Dr Ben Goldacre (Principal Investigator)
● Emma Beer (Senior Project Manager)
● Paul Walsh (Head of Technical Product)
● Vitor Baptista (OpenTrials Technical Lead)
● Evgeny Karev (Senior Developer)
● Ben Meghreblian (Community Manager)
opentrials.net

10. Thank you
Email: opentrials@okfn.org
Twitter: @opentrials
Hack Day (8th Oct, Berlin): opentrials.net/hackday
Beta launch (10th Oct, Berlin): opentrials.net/launch
Academic paper: opentrials.net/paper
Contribute: opentrials.net/contribute
opentrials.net