Document is current

Article History

Received: 12 January 2024

Accepted: 25 February 2024

First Online: 9 April 2024

Declarations

:

: This study was approved by the University of Pennsylvania Institutional Review Board (protocol # 851061). In compliance with National Institutes of Health requirements, the other participating institution (Northwestern University) has agreed to rely on a single IRB (sIRB). The University of Pennsylvania IRB is the designated sIRB. A reliance agreement was executed between the University of Pennsylvania IRB and Northwestern University IRB. The Family Heart Foundation does not have its own IRB, so the University of Pennsylvania IRB oversees study activities at the Family Heart Foundation. Informed consent will be obtained from: all participants who complete a lipid panel through the study; all legal guardians of relatives ages 2–17 who are interested in completing screening for the child; and all participants who complete qualitative interviews. Assent will be obtained from youth relatives (ages 7–17) whose legal guardians express interest in having them complete screening. Informed consent was waived by the IRB of record for probands for participation in cascade screening and assent was waived for relatives ages 2–6. Relatives who participate in the study but do not obtain a new lipid panel will receive an opt-out-framed, modified informed consent form.

: Not applicable.

: The authors declare the following competing interests: DJR is the Chief Scientific Advisor and immediate past Chair of the Board at the Family Heart Foundation; and is on the Scientific Advisory Board of Alnylam Pharmaceuticals, Novartis, and Verve Therapeutics. He is a founder of VascularStrategies, and is a consultant for Regeneron Pharmaceuticals, Inc. KGV is a part-owner of VALHealth, a behavioral economics consulting firm, and receives research funding from Independence Blue Cross and research funding and consulting support from the American Heart Association, none of which are related to the work described in this manuscript. RSB is the principal at Implementation Science & Practice, LLC. She receives royalties from Oxford University Press, consulting fees from United Behavioral Health and OptumLabs. She is currently an appointed member of the National Advisory Mental Health Council and the NASEM study, "Blueprint for a national prevention infrastructure for behavioral health disorders," and serves on the advisory boards for AIM Youth Mental Health Foundation and the Klingenstein Third Generation Foundation outside of the submitted work. RSB is also an Associate Editor of Implementation Science and all decisions on the publication were made by other Senior Editors. The remaining authors (CJ, JC, MPM, ET, MC, ARP, TK) declare that they have no competing interests.