Funding for this research was provided by:
National Heart, Lung, and Blood Institute (K25 HL125954, R01 HL141286)
Received: 7 November 2019
Accepted: 30 April 2020
First Online: 19 May 2020
Ethics approval and consent to participate
: The Institutional Review Board at Cincinnati Children’s Hospital Medical Center approved the study. Upon local IRB approval of this study, we submitted a data use proposal to the CFF Patient Registry Committee, which undertakes an established peer-review process of every request. We refined our request according to Committee feedback and, once they gave final approval, we received non-identifiable and non-traceable data through an encrypted data delivery Citrix ShareFile system. All individuals diagnosed with CF and associated disorders who receive care at a center accredited by the CFF who have provided informed consent are considered eligible to have their data collected in the CFFPR. Per CFF requirements to acquire data in the CFFPR, each center obtained approval from their local institutional review board and written informed consent and assent from individuals and respective legal guardians as required. The analysis cohort derived from the CFFPR and utilized in this particular study was therefore retrospective in nature and de-identified prior to receiving data from the CFF.
: Not applicable.
: RS serves as a member of the Cystic Fibrosis Foundation Patient Registry Committee. JPC is an employee of the Cystic Fibrosis Foundation. Authors RS and JPC have no other competing interests to declare. EA has no competing interests to declare.