One-of-a-kind study uses smartphone to track real-life cystic fibrosis
BETHESDA, Maryland – (COMMERCIAL THREAD) – Today, the Cystic Fibrosis Foundation announced the launch of the HERO-2: Home Reported Outcomes Study, a one-of-a-kind home observational study that aims to characterize the range of outcomes achieved by people using Trikafta. ® (élexacaftor / tézacaftor / ivacaftor). The study will use observations that people living with cystic fibrosis make about their health in their daily lives to understand the impact of Trikafta when taken in the real world.
“Data from clinical studies suggest that Trikafta and other highly effective modulators have a transformative effect on pulmonary and nutritional outcomes in cystic fibrosis, but we still have a lot to learn about the impact of these therapies on daily life with cystic fibrosis, ”said Dr. Bruce Marshall, Chief Medical Officer and Senior Vice President of Clinical Affairs for the Cystic Fibrosis Foundation. “Understanding real-world experiences with Trikafta will inform the continuing evolution of CF care and help prioritize future research and support programs to meet the needs of people on modulators. We are grateful to our collaborators at Indiana University School of Medicine and Folia Health for enabling this important research. ”
For the first time in cystic fibrosis research, the HERO-2 study will allow people with cystic fibrosis to actively monitor their health and any changes they make to their daily therapies while taking Trikafta through updates. self-reported days on the Folia Health application for smartphones. Participants will use the app to enter weekly updates on their treatment usage and symptoms and perform monthly checks over a 12-month period. Using remote data entry through an app offers a new way to measure CF outcomes and learn how personalization of daily care works in the real world.
the study The design was developed by an interdisciplinary group of patients and caregivers, clinicians, scientists and information technologists over a period of more than eight months, during which they focused on ways to ensure that the design would work for the broadest group of patients and families.
People 12 years of age or older living with cystic fibrosis who take Trikafta are eligible to participate.
The HERO-2 study is being conducted by Indiana University School of Medicine with funding from the Cystic Fibrosis Foundation. The app that powers the study was developed by digital health company Folia Health, and the data will be linked to the CF Foundation’s Patient Registry, a robust database that informs CF research and care.
About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the world leader in finding a cure for cystic fibrosis. The Foundation funds more research into cystic fibrosis than any other organization, and nearly all of the cystic fibrosis medications available today have been made possible through the support of the Foundation. Based in Bethesda, Maryland, the Foundation also supports and accredits a nationwide network of healthcare facilities that has been recognized by the National Institutes of Health as a model of care for chronic disease. To further its mission of finding a cure for all people living with cystic fibrosis, the CF Foundation launched its $ 500 million program Path to a cure initiative. This ambitious research program aims to accelerate the next generation of transformative cystic fibrosis therapies and provide treatment for everyone with cystic fibrosis. The CF Foundation is a non-profit organization supported by donors. For more information visit cff.org.