Zobrazeno 1 - 9
of 9
pro vyhledávání: '"Ilana M. Miller"'
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-8 (2023)
Abstract The “diagnostic odyssey” describes the process those with undiagnosed conditions undergo to identify a diagnosis. Throughout this process, families of children with undiagnosed conditions have multiple opportunities to decide whether to
Externí odkaz:
https://doaj.org/article/5528a44c15a94ff5a1871c88d347d0cb
Autor:
Erin Turbitt, Jennefer N. Kohler, Frank Angelo, Ilana M. Miller, Katie L. Lewis, Katrina A.B. Goddard, Benjamin S. Wilfond, Barbara B. Biesecker, Michael C. Leo
PURPOSE: People report experiencing value from learning genomic results even in the absence of clinically actionable information. Such personal utility has emerged as a key concept in genomic medicine. The lack of a validated patient-reported outcome
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::17abbf070a4bd6c824643df0723668e9
https://hdl.handle.net/10453/166278
https://hdl.handle.net/10453/166278
Autor:
Katie L. Lewis, Alexis R Heidlebaugh, Leslie G. Biesecker, David Ng, Ilana M. Miller, Sandra Epps, William M. P. Klein, Paul K. J. Han, Kristen P Fishler, Barbara B. Biesecker, Charlotte L Hepler
Publikováno v:
Genet Med
PURPOSE: Racial minority populations are underrepresented in genomics research. This study enrolled African-descended individuals in a sequencing study and reported their characteristics. METHODS: We purposively recruited 467 individuals self-identif
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::a57bda66d4ce24d64565887c7761cba1
https://doi.org/10.1038/s41436-018-0341-9
https://doi.org/10.1038/s41436-018-0341-9
Publikováno v:
Journal of Community Genetics. 11:119-123
Cancer genetic services are underutilized by high-risk clients in community-based health settings. To understand this disparity, 108 Planned Parenthood high-risk clients completed a utilization-focused survey. Clients expressed interest (78.8%) and i
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::167ae40827d305b2f9746bc9c5c7718e
https://doi.org/10.1007/s12687-019-00420-z
https://doi.org/10.1007/s12687-019-00420-z
Autor:
Katherine Clegg Smith, Neha Kumar, Erin Turbitt, Breana Cham, Ilana M. Miller, Rajiv N. Rimal, Barbara B. Biesecker
Publikováno v:
Am J Med Genet A
Published 2019. This article is a U.S. Government work and is in the public domain in the USA. This study explored patients' experiences and perceptions of living with thalassemia (an inherited hematologic disorder), perceptions of social stigma, and
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::5e859df17c68d3f6e2109606115a2a16
https://doi.org/10.1002/ajmg.a.61107
https://doi.org/10.1002/ajmg.a.61107
Autor:
Kendall L. Umstead, Tyra G. Wolfsberg, Leslie G. Biesecker, Lydia J. Thompson, Anh-Dao Nguyen, Mark T Fredriksen, Charlotte L Hepler, Paul K. J. Han, Katie L. Lewis, Ilana M. Miller, Barbara B. Biesecker, Erin Turbitt, Gretchen Gibney
Publikováno v:
Transl Behav Med
How individuals perceive uncertainties in sequencing results may affect their clinical utility. The purpose of this study was to explore perceptions of uncertainties in carrier results and how they relate to psychological well-being and health behavi
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::ee8e16597c7e7310a070b18d65619819
https://pubmed.ncbi.nlm.nih.gov/31505002
https://pubmed.ncbi.nlm.nih.gov/31505002
Autor:
Katie L. Lewis, Lydia J. Thompson, Barbara B. Biesecker, Kendall L. Umstead, Ilana M. Miller, Kristen P Fishler, Jennifer J. Johnston, Leslie G. Biesecker
In-person education and counseling for all people receiving genetic results is the predominant model of disclosure but is challenged by the growing volume of low-impact results generated by sequencing. Evidence suggests that web-based tools may be as
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::cecbe314316437f642a3415218b21809
https://europepmc.org/articles/PMC5985358/
https://europepmc.org/articles/PMC5985358/
Autor:
Erin Turbitt, Kristen P Fishler, Kendall L. Umstead, Jennifer J. Johnston, Leslie G. Biesecker, Ilana M. Miller, Katie L. Lewis, Alexis R Heidlebaugh, Barbara B. Biesecker, John H Patton
Importance A critical bottleneck in clinical genomics is the mismatch between large volumes of results and the availability of knowledgeable professionals to return them. Objective To test whether a web-based platform is noninferior to a genetic coun
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f9ae88ca2882a46f22dff87e102acf81
https://hdl.handle.net/10453/129813
https://hdl.handle.net/10453/129813
Autor:
Tokunbor A. Lawal, Leslie G. Biesecker, Jennifer J. Johnston, Katie L. Lewis, Ilana M. Miller, Barbara B. Biesecker, David Ng
Publikováno v:
Genetics in medicine : official journal of the American College of Medical Genetics
Studies on returning variants of uncertain significance (VUS) results have predominantly included patients with a personal or family history of cancer and cancer-associated gene VUS. This study examined health behaviors among participants with cardio
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::cdf95933e64e8bdd175130b66bb0df84
https://pubmed.ncbi.nlm.nih.gov/29997389
https://pubmed.ncbi.nlm.nih.gov/29997389