Hopkins Individualized Care for Patients with Cystic Fibrosis (inCF)

The inCF team is working toward a new approach to cystic fibrosis (CF) patient care by collecting comprehensive study data on individuals with CF and using these data to customize care to each patient.  They are also evaluating the impact of this data-driven, customized approach on patient outcomes.  Sequencing whole genome data allows the inCF team to determine patients’ key CF genotypes, as well as their status with respect to all known genes and genomic regions related to CF.  Clinical data are also captured, as well as data on environmental exposures and respiratory and gastrointestinal microbiomes.  

Through the inCF pilot, the team plans to utilize its experience to take a giant step forward: that of enrolling all newborns diagnosed with CF and demonstrating the possibility of customizing care for each one.  Newborns will be stratified based on their genes, environmental exposures, and other variables – creating an individualized treatment tract (ITT) that charts the expected course of their disease and their treatment plan.  Experts in bioinformatics will coordinate and analyze the massive amount of data obtained, track individual patients’ trajectories, and inform the iterative update of individuals’ tracts as their health evolves.

A key goal of the inCF pilot is to determine if a coordinated, individualized approach to CF management yields better outcomes for patients, reduces the costs of care, and fosters additional research discoveries that, in turn, contribute to reduced disease severity and longer life for individuals with CF.  

The direct result of the inCF pilot will be individualization of care for all new CF patients at Johns Hopkins, with expected improvement in important clinical outcomes such as lung function, nutritional status, and the development of diabetes.  Thereafter, widespread dissemination and implementation of the ITT approach could improve outcomes for the 25,000 people who have CF in the US, and potentially for the 70,000 individuals afflicted worldwide.

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