ABOUT THE REGISTRY
ICFTN CF Registry
Cystic fibrosis is a rare, chronic disease that shortens lives — and in many parts of the world, we don’t have the necessary data to change that. Some low- and middle-income countries have created CF registries, but these often lack the tools, standardization, and support needed to turn patient data into meaningful improvements in care.
Access the RegistryData Security & Global Impact
Data security and patient protection are core elements of the platform’s design. Centers keep ownership of their data while contributing to a larger picture — one that highlights regional trends, uncovers research opportunities, and ultimately helps improve and extend the lives of people living with CF worldwide.
Global Network Objectives
The International Cystic Fibrosis Training Network (ICFTN) was established to bridge that gap.
The ICFTN team has developed a secure, user-friendly, REDCap-based platform operating at the front line of care.
Managed by DALD Foundation with support from the Cystic Fibrosis Foundation to improve CF care.
Clinical Excellence & Research
The ICFTN team at the University of Alabama at Birmingham has developed a secure, user-friendly, REDCap-based platform that operates at the front line of care. The platform serves two purposes: it provides clinicians with a practical tool for managing individual patients and generating center-specific reports, and it supports a multi-country registry that facilitates epidemiological research and quality improvement across the network.
Access the Registry
