opentrials || ben meghreblian || future health

An open, linked database of information about the world's clinical trials

Ben Meghreblian, Community Manager

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

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

OpenTrials overview

opentrials.net

How are we building it?● 3 ways

○ Scraping registries○ Donations of structured data○ Crowdsourced document contributions

opentrials.net

335,032 deduplicated trials

ClinicalTrials.gov 223,317EU CTR 28,685WHO ICTRP 320,430

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

opentrials.net

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

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

Thank youEmail: 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