Cystic Fibrosis Learning Network Accelerates Improvement in Care

The CF Learning Network (CFLN), funded by the CF Foundation and established in 2016 with 13 CF care center programs, serves as an engine for innovation to design, test, pilot, and implement new ways to improve health and quality of life for people living with cystic fibrosis.

Today, the CFLN includes 29 programs collecting data such as lung function and nutrition status for thousands of patients. Care centers receive this compiled data on a monthly basis in hopes of rapidly scaling improved treatment methods, and speeding up the interchange between information-gathering, research, and improved treatment.

With monthly data across multiple care centers, clinicians, researchers and patient/family partners “can see how they're doing on a much more regular basis, so they can get a rhythm of improvement that's a lot faster,” says Michael Seid, PhD, director of Health Outcomes and Quality Care Research in Pulmonary Medicine at Cincinnati Children’s.

As part of CFLN, project investigators from Cincinnati Children’s have worked with community members to design a CF Care Model for the Future that will compile timely data, include automated reminders for clinicians and families, enable providers to design and coordinate care for specific segments of the CF population, and set and monitor collaborative goals for self-management support.

All CFLN care centers have shown improvement, but with variability, and investigators hope to reduce that variability so patients see top outcomes across care centers. Other goals include: personalized care and reduced pulmonary decline to preserve lung health (since many treatments, on the horizon, could correct the genetic defect that causes many CF cases).

“Ultimately, we hope the Learning Network won’t be a separate thing,” explains Seid. “It will just be how the CF Centers do their work. They’ll all learn together and improve together.”

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