A survey: Understanding the health and perspectives of people with CF not benefiting from CFTR modulators.

"CONFLICTS OF INTEREST Emily Kramer‐Golinkoff is a founding member of Emily's Entourage. In the past 3 years, her financial and commercial interests were with Medidata Solutions, Inc and Translate Bio, in terms of speaking at meetings/travel. Her noncommercial interests included consulting for the University of Pennsylvania Health System and speaking at meetings/travel from Cystic Fibrosis Research Incorporated, Personalized Medicine Coalition, Academy Health, and BIO International. Amanda Camacho was employed by Emily's Entourage at the time of the design and conduct of the survey as well as at the time of the writing of the original version of the manuscript. Liza Kramer had commercial interests (past 3 years) in terms of speaking at meetings/travel for Translate Bio, Cystic Fibrosis Research Incorporated, and Personalized Medicine Coalition. Jennifer L. Taylor‐Cousar, in the past 3 years, has displayed her financial and commercial interests as faculty for an institution that is part of the CF TDN. She had been site PI on studies for Vertex, Bayer, Celtaxys, Eloxx, Nivalis, and Proteostasis; on advisory boards for Genentech, Gilead, AbbVie, Insmed, and Vertex; done consulting/provided clinical trial design advice for Vertex, Celtaxys, Proteostasis, Santhera, 4DMT, and Polarean; and served on the data monitoring committee for AbbVie. She is a professional member of the CFF Clinical Research Executive Committee, CF TDN Women's Health Research Working Group, and ATS Clinical Problems Programming and Scientific Grant Review Committees. On a noncommercial basis, she had received a grant from the CFF. She also has nonprofit relationships with the CFF Board of Trustees and Emily's Entourage Scientific Advisory Board."

"The authors would like to acknowledge the vital contributions of people with CF and their families that participated in the survey and contributed data for this study. The authors would also like to thank Siri Vaeth, MSW (Cystic Fibrosis Research, Inc.), Enid Aliaj, MA (Cystic Fibrosis Foundation), and Martin Moore and Cystic Fibrosis Foundation Community Voice for providing guidance in survey development, and those who helped with survey testing: Laura Bonnell; Michelle Shore, LPC and LLB; Rebecca Cosgriff, MA; Martin Moore; Erin Moore; Siri Vaeth, MSW; Enid Aliaj, MA and Lucy Allen, PhD. This study was supported by Emily's Entourage."