GENETIC ALLIANCE. PATIENT-CENTERED RESEARCH STARTS EARLY.

The article focuses on the move of the Community Engaged Network for All (CENA), a network of disease advocacy organizations, to deploy the online tool and crowdsourcing model Mosaic to work towards patient centricity in research by involving patients and caregivers at all points of the research process. Topics covered include privacy settings for sharing of health data, a patient-centered research for Joubert Syndrome (JS), and the impact of patient-centered research.