Cystic Fibrosis Foundation Patient Registry Data Analysis

Details

Capability: Capabilities

Subcapability: Public Health Informatics

Project Timeline: 7/13/2010

Sequoia Foundation provided scientists to generate the eligible study population per Cystic Fibrosis Center for the project using coded data from the online CFF Patient Registry. Lists of Registry patient IDs by Center were produced to enable race/ethnic group and genotype verification by CF Centers and data cleaning. These data and lists were provided to the Stanford project coordinator for use in generating study recruitment and data verification letters to CF Centers. Two or more snapshots of coded Registry data were retained to track cleaning and recruitment efforts, and project protocols were reviewed. During the the third year, Sequoia Foundation scientists, in conjunction with study collaborators, will conduct data analysis to accomplish project aims using updated data in the CFF Patient Registry. Scientists will also assist in completing manuscripts, posters and oral presentations of the results.