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Authors
Mendez, Gustavo G.
Nocek, Judith M.
Brambilla, Donald J.
Jacobs, Sara
Cole, Oladipo
Kanter, Julie
Glassberg, Jeffrey
Saving, Kay L.
Melvin, Cathy L.
Gibson, Robert W.
Treadwell, Marsha
Jackson, George L.
King, Allison A.
Gordeuk, Victor R.
Kroner, Barbara
Hsu, Lewis L.
,
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Funding
Funding for this research was provided by:
NIH (3U01HL134042-04S2, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, 5U01HL134042-S2, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042, U24HL133948, U01HL133964, U01HL133990, U01HL133996, U01HL133994, U01HL133997, U01HL134004, U01HL134007, U01HL134042)
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Article History
Received: 8 November 2022
Accepted: 13 February 2024
First Online: 6 March 2024
Declarations
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: At each of the eight clinical sites in the SCDIC plus the SCDIC data coordinating center at RTI International, ethics approval for the SCDIC Registry and the analysis of the deidentified human data by the data coordinating center were provided by the site’s Institutional Review Board (IRB); IRB protocol reference numbers for each site were: 1078191 (Augusta University), 17061401 (University of Illinois at Chicago), 00073506 (Duke University), 16-01047 (Icahn School of Medicine at Mount Sinai), 00066242 (Medical University of South Carolina), 00007817 (St Jude Children’s Hospital), 2017-093 (University of California, San Francisco), 201706016 (Washington University), and 14157 (RTI International). Written informed consent was obtained from each adult participant in the SCDIC Registry (or from a parent/guardian for participants under age 18 years) for voluntary enrollment.SCDIC Registry data were owned by the SCDIC investigators during the period of SCDIC funding, and therefore no permission was needed to conduct this analysis of SCDIC data by the SCDIC investigators and SCDIC data coordinating center at the time of manuscript preparation through 2023. When the funding for SCDIC ended in 2023, the SCDIC Registry data became publicly available as SCDIC Registry-I. Datafiles for SCDIC Registry-I were transferred in 2024 to the NHLBI data repository known as Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC). SCDIC Registry-I data are now publicly available to researchers through the NHLBI BioLINCC using the procedures at .
: Not applicable. No identifiable data for SCDIC Registry participants is being published.
: The authors declare no competing interests.
