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1.
Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care.
J Pediatr
; 261: 113537, 2023 10.
Artículo
en Inglés
| MEDLINE | ID: mdl-37271495
2.
Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.
Am J Bioeth
; 23(7): 17-26, 2023 07.
Artículo
en Inglés
| MEDLINE | ID: mdl-37204146
3.
Developer Perspectives on Potential Harms of Machine Learning Predictive Analytics in Health Care: Qualitative Analysis.
J Med Internet Res
; 25: e47609, 2023 11 16.
Artículo
en Inglés
| MEDLINE | ID: mdl-37971798
4.
Perceived utility and disutility of genomic sequencing for pediatric patients: Perspectives from parents with diverse sociodemographic characteristics.
Am J Med Genet A
; 188(4): 1088-1101, 2022 04.
Artículo
en Inglés
| MEDLINE | ID: mdl-34981646
5.
Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study.
J Med Internet Res
; 24(12): e42084, 2022 12 21.
Artículo
en Inglés
| MEDLINE | ID: mdl-36542454
6.
"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.
Genet Med
; 23(5): 837-844, 2021 05.
Artículo
en Inglés
| MEDLINE | ID: mdl-33420343
7.
Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.
Genet Med
; 23(12): 2250-2259, 2021 12.
Artículo
en Inglés
| MEDLINE | ID: mdl-34282302
8.
"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.
J Genet Couns
; 30(6): 1707-1718, 2021 12.
Artículo
en Inglés
| MEDLINE | ID: mdl-34096130
9.
A Typology of Existing Machine Learning-Based Predictive Analytic Tools Focused on Reducing Costs and Improving Quality in Health Care: Systematic Search and Content Analysis.
J Med Internet Res
; 23(6): e26391, 2021 06 22.
Artículo
en Inglés
| MEDLINE | ID: mdl-34156338
10.
Barriers and Facilitators to Real-world Implementation of the Diabetes Prevention Program in Large Healthcare Systems: Lifestyle Coach Perspectives.
J Gen Intern Med
; 35(6): 1684-1692, 2020 06.
Artículo
en Inglés
| MEDLINE | ID: mdl-32291720
11.
Supporting caregivers during hematopoietic cell transplantation for children with primary immunodeficiency disorders.
J Allergy Clin Immunol
; 143(6): 2271-2278, 2019 06.
Artículo
en Inglés
| MEDLINE | ID: mdl-31178019
12.
Caring for the Caregivers - Covid-19 Vaccination for Essential Members of the Health Care Team.
N Engl J Med
; 384(9): e33, 2021 Mar 04.
Artículo
en Inglés
| MEDLINE | ID: mdl-33577149
13.
Implementation of a group-based diabetes prevention program within a healthcare delivery system.
BMC Health Serv Res
; 19(1): 694, 2019 Oct 15.
Artículo
en Inglés
| MEDLINE | ID: mdl-31615525
14.
When All You Have Is Quality of Life - Making Medical Decisions in the Face of Uncertainty.
N Engl J Med
; 383(16): 1507-1509, 2020 Oct 15.
Artículo
en Inglés
| MEDLINE | ID: mdl-33053282
15.
Blurred Boundaries: Toward an Expanded Ethics of Research and Clinical Care.
Am J Bioeth
; 23(8): 5-9, 2023 Aug.
Artículo
en Inglés
| MEDLINE | ID: mdl-38410998
16.
Collecting Practice-level Data in a Changing Physician Office-based Ambulatory Care Environment: A Pilot Study Examining the Physician induction interview Component of the National Ambulatory Medical Care Survey.
Vital Health Stat 2
; (176): 1-18, 2017 Nov.
Artículo
en Inglés
| MEDLINE | ID: mdl-29148968
17.
From "Ought" to "Is": Surfacing Values in Patient and Family Advocacy in Rare Diseases.
Am J Bioeth
; 21(12): 1-3, 2021 12.
Artículo
en Inglés
| MEDLINE | ID: mdl-34806973
18.
An exploratory mixed-methods crossover study comparing DVD- vs. Web-based patient decision support in three conditions: The importance of patient perspectives.
Health Expect
; 18(6): 2880-91, 2015 Dec.
Artículo
en Inglés
| MEDLINE | ID: mdl-25263630
19.
Redefining Risk and Benefit: Understanding the Decision to Undergo Contralateral Prophylactic Mastectomy.
Qual Health Res
; 25(9): 1251-9, 2015 Sep.
Artículo
en Inglés
| MEDLINE | ID: mdl-25371380
20.
Beyond barriers: fundamental 'disconnects' underlying the treatment of breast cancer patients' sexual health.
Cult Health Sex
; 16(9): 1169-80, 2014.
Artículo
en Inglés
| MEDLINE | ID: mdl-25138386