Enabling adaptation and use of a collaborative, registry-supported care and learning system to inform management of chronic diseases

The overarching objective of the RWJF award is to design, build, test, and evaluate the health information technology (HIT) systems and care processes required to implement the feed-forward coproduction components of a registry-supported care and learning system beginning with cystic fibrosis (CF). Key components include: 1) feed-forward patient data and clinical data for use at point of care; 2) development of “dashboards” that can be used by patients and by clinicians to guide care decisions and tracking of treatments and outcomes; and, 3) feeding the patient reported and clinical data into the CFF registry.