Self - Scaling Registries

The Self Scaling Registry project is an open source software platform aimed to simplify multi-institutional patient registry collaboration. Built upon existing successful open source projects i2b2 and SHRINE, the Self Scaling Registry project empowers researchers to form their own data sharing networks, manage data use, and build on top of existing datasets. Our initial deployment of this platform is supporting the CARRA network, a group of pediatric rheumatologists participating from 60 medical institutions, in forming a patient registry to be the basis for future research work, comparative effectiveness studies, and post marketing surveillance.