Halley MC - Search Results

1

Supporting undiagnosed participants when clinical genomics studies end.

Halley MC, Ashley EA, Tabor HK. Halley MC, et al. Nat Genet. 2022 Aug;54(8):1063-1065. doi: 10.1038/s41588-022-01150-8. Nat Genet. 2022. PMID: 35902745 Free PMC article.

2

"It seems like COVID-19 now is the only disease present on Earth": living with a rare or undiagnosed disease during the COVID-19 pandemic.

Halley MC, Stanley T, Maturi J, Goldenberg AJ, Bernstein JA, Wheeler MT, Tabor HK. Halley MC, et al. Genet Med. 2021 May;23(5):837-844. doi: 10.1038/s41436-020-01069-7. Epub 2021 Jan 8. Genet Med. 2021. PMID: 33420343 Free PMC article.

3

"Doctors can read about it, they can know about it, but they've never lived with it": How parents use social media throughout the diagnostic odyssey.

Deuitch NT, Beckman E, Halley MC, Young JL, Reuter CM, Kohler J, Bernstein JA, Wheeler MT; Undiagnosed Diseases Network; Ormond KE, Tabor HK. Deuitch NT, et al. Among authors: halley mc. J Genet Couns. 2021 Dec;30(6):1707-1718. doi: 10.1002/jgc4.1438. Epub 2021 Jun 6. J Genet Couns. 2021. PMID: 34096130 Free PMC article.

4

Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.

Miller EG, Woodward AL, Flinchum G, Young JL, Tabor HK, Halley MC. Miller EG, et al. Among authors: halley mc. Genet Med. 2021 Dec;23(12):2250-2259. doi: 10.1038/s41436-021-01273-z. Epub 2021 Jul 19. Genet Med. 2021. PMID: 34282302 Free PMC article.

5

Perceived utility and disutility of genomic sequencing for pediatric patients: Perspectives from parents with diverse sociodemographic characteristics.

Halley MC, Young JL, Fernandez L, Kohler JN; Undiagnosed Diseases Network; Bernstein JA, Wheeler MT, Tabor HK. Halley MC, et al. Am J Med Genet A. 2022 Apr;188(4):1088-1101. doi: 10.1002/ajmg.a.62619. Epub 2022 Jan 3. Am J Med Genet A. 2022. PMID: 34981646 Free PMC article.

6

A call for an integrated approach to improve efficiency, equity and sustainability in rare disease research in the United States.

Halley MC, Smith HS, Ashley EA, Goldenberg AJ, Tabor HK. Halley MC, et al. Nat Genet. 2022 Mar;54(3):219-222. doi: 10.1038/s41588-022-01027-w. Nat Genet. 2022. PMID: 35256804 Free PMC article.

7

Beyond race: Recruitment of diverse participants in clinical genomics research for rare disease.

Young JL, Halley MC, Anguiano B, Fernandez L, Bernstein JA, Wheeler MT, Tabor HK; Undiagnosed Diseases Network Consortium. Young JL, et al. Among authors: halley mc. Front Genet. 2022 Aug 22;13:949422. doi: 10.3389/fgene.2022.949422. eCollection 2022. Front Genet. 2022. PMID: 36072659 Free PMC article.

8

Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study.

Yabumoto M, Miller E, Rao A, Tabor HK, Ormond KE, Halley MC. Yabumoto M, et al. Among authors: halley mc. J Med Internet Res. 2022 Dec 21;24(12):e42084. doi: 10.2196/42084. J Med Internet Res. 2022. PMID: 36542454 Free PMC article.

9

Participation in a national diagnostic research study: assessing the patient experience.

Rosenfeld LE, LeBlanc K, Nagy A, Ego BK; Undiagnosed Diseases Network; McCray AT. Rosenfeld LE, et al. Orphanet J Rare Dis. 2023 Apr 10;18(1):73. doi: 10.1186/s13023-023-02695-5. Orphanet J Rare Dis. 2023. PMID: 37032333 Free PMC article.

10

Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.

Halley MC, Halverson CME, Tabor HK, Goldenberg AJ. Halley MC, et al. Am J Bioeth. 2023 Jul;23(7):17-26. doi: 10.1080/15265161.2023.2207500. Epub 2023 May 19. Am J Bioeth. 2023. PMID: 37204146

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