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Developing a community-led rare disease ELSI research agenda.
Berrios C, McBeth M, Bradley-Ewing A, Schuetz N, Campbell A, Talebizadeh Z, Garrett JR, Falicov T, Martinez F; Rare Voices Advisory Group; Hurley EA. Berrios C, et al. Among authors: mcbeth m. Orphanet J Rare Dis. 2024 Jan 22;19(1):23. doi: 10.1186/s13023-023-02986-x. Orphanet J Rare Dis. 2024. PMID: 38254122 Free PMC article. Review.
Insurance denials and diagnostic rates in a pediatric genomic research cohort.
Zion TN, Berrios CD, Cohen ASA, Bartik L, Cross LA, Engleman KL, Fleming EA, Gadea RN, Hughes SS, Jenkins JL, Kussmann J, Lawson C, Schwager C, Strenk ME, Welsh H, Rush ET, Amudhavalli SM, Sullivan BR, Zhou D, Gannon JL, Heese BA, Moore R, Boillat E, Biswell RL, Louiselle DA, Puckett LMB, Beyer S, Neal SH, Sierant V, McBeth M, Belden B, Walter AM, Gibson M, Cheung WA, Johnston JJ, Thiffault I, Farrow EG, Grundberg E, Pastinen T. Zion TN, et al. Among authors: mcbeth m. Genet Med. 2023 May;25(5):100020. doi: 10.1016/j.gim.2023.100020. Epub 2023 Jan 28. Genet Med. 2023. PMID: 36718845 Free PMC article.