Session ID: 

Integration of Registry Data Into Clinical Care Process

10:00am - 11:00am Wednesday, February 13
Orlando - Orange County Convention Center


The Cystic Fibrosis Foundation Patient Registry (CFFPR) was established in 1966. It is likely the oldest rare disease registry in the USA. The data from CFFPR has been used in many peer-reviewed publications and manuscripts and helped in numerous quality improvement (QI) projects. It has been used to assist in developing Cystic Fibrosis (CF) care guidelines, study CF treatments and outcomes and to design CF clinical trials. To address the expanding uses of the Registry data, the CFFPR team initiated a project to create a web application that allowed for detailed reporting of healthcare data. The main goal of the project was to help clinicians with population management and QI initiatives. However, soon after deployment it became obvious that the disease-specific registry could present a patient's data in a format that is very helpful in providing care to patients. The lecturers will describe what makes the registry data so uniquely positioned in the healthcare information and technology space.

Learning Objectives: 

  • Describe main uses of the disease-specific registry data
  • Explain how registry data could provide value to clinicians
  • Demonstrate practical use of registry data in CF Care process
  • Identify main difference between EMR and registry data


Senior Director, Patient Registry,
Cystic Fibrosis Foundation
IT Project Manager,
Cystic Fibrosis Foundation


Clinical Informaticists
Physician, CMO, CMIO
Population Health Management Professional