Integration of Registry Data into Clinical Care Process
10:00am - 11:00amWednesday, 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 speaklers will describe what makes the registry data so uniquely positioned in the healthcare information and technology space.
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