Detalhe da pesquisa
1.
Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.
Am J Bioeth
; 23(7): 17-26, 2023 07.
Artigo
em Inglês
| MEDLINE | ID: mdl-37204146
2.
Effects of hypermobile Ehlers-Danlos syndrome patients on the workflow and professional satisfaction of genetic counselors.
J Genet Couns
; 2023 Nov 20.
Artigo
em Inglês
| MEDLINE | ID: mdl-37984420
3.
Lost in translation: the history of the Ebers Papyrus and Dr. Carl H. von Klein.
J Med Libr Assoc
; 111(4): 844-851, 2023 Oct 02.
Artigo
em Inglês
| MEDLINE | ID: mdl-37928112
4.
Genetic Essentialism and Social Warranting.
Perspect Biol Med
; 65(3): 396-414, 2022.
Artigo
em Inglês
| MEDLINE | ID: mdl-36093773
5.
Patients with Ehlers-Danlos syndrome on the diagnostic odyssey: Rethinking complexity and difficulty as a hero's journey.
Am J Med Genet C Semin Med Genet
; 187(4): 416-424, 2021 12.
Artigo
em Inglês
| MEDLINE | ID: mdl-34524722
6.
Returning negative results from large-scale genomic screening: Experiences from the eMERGE III network.
Am J Med Genet A
; 185(2): 508-516, 2021 02.
Artigo
em Inglês
| MEDLINE | ID: mdl-36046768
7.
Ethical conflicts in translational genetic research: lessons learned from the eMERGE-III experience.
Genet Med
; 22(10): 1667-1672, 2020 10.
Artigo
em Inglês
| MEDLINE | ID: mdl-32555418
8.
Patients' willingness to reconsider cancer genetic testing after initially declining: Mention it again.
J Genet Couns
; 29(1): 18-24, 2020 02.
Artigo
em Inglês
| MEDLINE | ID: mdl-31553110
9.
Diagnostic deserts: Community-level barriers to appropriate genetics services.
Am J Med Genet A
; 191(1): 296-298, 2023 Jan.
Artigo
em Inglês
| MEDLINE | ID: mdl-36282041
10.
Evolving Attitudes Toward Numeric Pain Assessment Among Patients with Hypermobile Ehlers-Danlos Syndrome: A Qualitative Interview Study.
Pain Med
; 24(6): 713-715, 2023 06 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-36322007
11.
What is "Personal" About Personal Experience? A Call to Reflexivity for All.
Am J Bioeth
; 23(1): 39-41, 2023 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-36595008
12.
Unspoken ambivalence in kinship obligation in living donation.
Prog Transplant
; 28(3): 250-255, 2018 09.
Artigo
em Inglês
| MEDLINE | ID: mdl-29895237
13.
Living Kidney Donors Who Develop Kidney Failure: Excerpts of Their Thoughts.
Am J Nephrol
; 43(6): 389-96, 2016.
Artigo
em Inglês
| MEDLINE | ID: mdl-27222023
14.
Patients' strategies for numeric pain assessment: a qualitative interview study of individuals with hypermobile Ehlers-Danlos Syndrome.
Disabil Rehabil
; 46(8): 1527-1533, 2024 Apr.
Artigo
em Inglês
| MEDLINE | ID: mdl-37067184
15.
Social media use by patients with hypermobile Ehlers-Danlos syndrome.
Mol Genet Genomic Med
; 12(6): e2467, 2024 Jun.
Artigo
em Inglês
| MEDLINE | ID: mdl-38860470
16.
Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.
Orphanet J Rare Dis
; 19(1): 122, 2024 Mar 14.
Artigo
em Inglês
| MEDLINE | ID: mdl-38486236
17.
Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes.
SSM Qual Res Health
; 32023 Jun.
Artigo
em Inglês
| MEDLINE | ID: mdl-37426705
18.
Patient Interest in the Development of a Center for Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder in the Chicagoland Region.
Res Sq
; 2023 Jul 14.
Artigo
em Inglês
| MEDLINE | ID: mdl-37503006
19.
Content Analysis of Emoji and Emoticon Use in Clinical Texting Systems.
JAMA Netw Open
; 6(6): e2318140, 2023 06 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-37310737
20.
Patient understanding of pharmacogenomic test results in clinical care.
Patient Educ Couns
; 115: 107904, 2023 10.
Artigo
em Inglês
| MEDLINE | ID: mdl-37531788