Expanding Cystic Fibrosis Registries to the Rest of the World

Cystic fibrosis (CF) is a global challenge. The epidemiological knowledge is incomplete and focused on patient registries in the United States, Canada, Europe, Australia and New Zealand, Brazil, and South Africa. To complete the global picture of CF, we have to learn from each individual with CF, as well as each cohort and population.

Structured, harmonized, quality-controlled, and sustainable patient registries are needed worldwide to complete this picture and give every person with CF the opportunity to be part of it.

Commitment, trust, transparency, and independence are key elements to building and running a sustainable registry. Combining the experience of existing registries with the commitment of persons with CF and caregivers around the globe could build the basis for more complete data collection. In doing so, we must strike a balance between the quantity and quality of data. The European CF Society Patient Registry Partnership Project for CF registries in low- and middle-income countries outside the World Health Organization European Region is an example of bridging the gaps and allowing broader registry participation.

"Do not call the global CF registry a dream, call it plan," and let's start with the first steps and get involved in the global CF community.