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Authors
MacKintosh, Erin Walker https://orcid.org/0000-0001-5999-911X
Chen, Maida Lynn
Wenger, Tara
Carlin, Kristen
Young, Luciana
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Funding
Funding for this research was provided by:
Seattle Children’s Hospital (410330930101)
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Article History
Received: 14 July 2020
Accepted: 17 November 2020
First Online: 4 January 2021
Compliance with Ethical Standards
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: Dr. MacKintosh, Dr. Chen, Dr. Wenger, Ms. Carlin declare no conflict of interest. Dr. Young is a member of the Marfan Foundation Professional Advisory Board.
: Waiver of consent was granted by the IRB for retrospective chart review of the complete institutional cohort. For the prospective/survey portion of the study, informed consent was obtained from subjects ≥ 18 years of age; for subjects ≤ 17 years of age, informed consent was obtained from legal guardians; and assent for participation was obtained from subjects age 7–17 years of age.
: Consent for publication was obtained from subjects ≥ 18 years of age, and from legal guardians for subjects ≤ 17 years of age.
: This study was reviewed and approved by the Institutional Review Board of Seattle Children’s Hospital (IRB #1113). The study was conducted in accordance with the ethical principles outlined by the International Center for Harmonization of Good Clinical Practice (ICH-GCP), that have their origin in the Declaration of Helsinki.
