Danese, David
Goss, Diana
Romano, Carla
Gupta, Catherine
Funding for this research was provided by:
Alnylam Pharmaceuticals
Article History
Received: 27 March 2023
Accepted: 13 October 2023
First Online: 26 October 2023
Declarations
:
: Ethics approval: Not applicable; the institutional review board (Advarra; Columbia, Maryland, USA) determined this protocol was exempt from need for approval as this was an observational study involving blinded telephone interviews and all data collected were anonymous and deidentified. All methods were carried out in accordance with relevant guidelines and regulations. Consent to participate: Participants provided informed consent/assent/parental permission (as applicable) to participate in this study.
: Verbal consent for publication of anonymized and deidentified data was included in the informed consent/assent form noting “If the results of this study are presented at scientific meetings or published in scientific journals, no information will be included that could identify you/your child or you/your child’s answers personally.” Consent/assent was documented (signed and dated) by the researcher conducting the consent/assent discussion.
: DD: Employee of Alnylam Pharmaceuticals and holds shares in Alnylam Pharmaceuticals. DG: Full-time employee of RTI Health Solutions, which was retained by the sponsor to conduct the study which is the subject of this manuscript. CR: Full-time employee of RTI Health Solutions, which was retained by the sponsor to conduct the study which is the subject of this manuscript. CG: Full-time employee of RTI Health Solutions at the time of this study, which was retained by the sponsor to conduct the study which is the subject of this manuscript.