Implementation and preliminary experiences of the HERO-2 real-world research study in patients with cystic fibrosis
Preliminary experiences of the HERO-2 study were shared at the 45th European Cystic Fibrosis Conference in Rotterdam, The Netherlands In June 2022.
HERO-2 is the first study designed:
Specifically as a multi-site, real-world research study conducted with no in-clinic visits
With an entirely online, independent consent/assent process under a single IRB
To use social media as an independent recruitment tool
Data collection is ongoing, with 56% of participants entering daily tracking information in April 2022.
This work is funded by the U.S. Cystic Fibrosis Foundation. Thank you to the U.S. clinicians, research coordinators, people with CF and families participating in this study.
We’re happy to provide preliminary results of this research free-of-charge: download below. We hope that this work will help the CF community continue its transition toward high-quality care from home.