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1.
GM1-gangliosidosis: The caregivers' assessments of symptom impact and most important symptoms to treat.
Am J Med Genet A
; 191(2): 408-423, 2023 02.
Artículo
en Inglés
| MEDLINE | ID: mdl-36541412
2.
Preparing newborn screening for the future: a collaborative stakeholder engagement exploring challenges and opportunities to modernizing the newborn screening system.
BMC Pediatr
; 22(1): 90, 2022 02 12.
Artículo
en Inglés
| MEDLINE | ID: mdl-35151296
3.
Outcomes of Physicians' Communication Goals During Patient Interactions.
Health Commun
; 36(7): 847-855, 2021 06.
Artículo
en Inglés
| MEDLINE | ID: mdl-31992094
4.
Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.
Value Health
; 23(12): 1639-1652, 2020 12.
Artículo
en Inglés
| MEDLINE | ID: mdl-33248520
5.
Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.
J Med Internet Res
; 22(5): e16734, 2020 05 21.
Artículo
en Inglés
| MEDLINE | ID: mdl-32436848
6.
Chronic disease management perspectives of colorectal cancer survivors using the Veterans Affairs healthcare system: a qualitative analysis.
BMC Health Serv Res
; 18(1): 171, 2018 03 09.
Artículo
en Inglés
| MEDLINE | ID: mdl-29523146
7.
Cost-effectiveness of Community-Based Minigrants to Increase Physical Activity in Youth.
J Public Health Manag Pract
; 23(4): 364-369, 2017.
Artículo
en Inglés
| MEDLINE | ID: mdl-27798526
8.
Expectations in the context of gallbladder and hernia surgery: a descriptive report.
Health Expect
; 18(5): 1797-806, 2015 Oct.
Artículo
en Inglés
| MEDLINE | ID: mdl-24386918
9.
Patients' anxiety and hope: predictors and adherence intentions in an acute care context.
Health Expect
; 18(6): 3034-43, 2015 Dec.
Artículo
en Inglés
| MEDLINE | ID: mdl-25327397
10.
Predictors of genetic testing decisions: a systematic review and critique of the literature.
J Genet Couns
; 23(3): 263-88, 2014 Jun.
Artículo
en Inglés
| MEDLINE | ID: mdl-24719248
11.
Uncertainties experienced by parents of children diagnosed with severe combined immunodeficiency through newborn screening.
Eur J Hum Genet
; 32(4): 392-398, 2024 Apr.
Artículo
en Inglés
| MEDLINE | ID: mdl-36973394
12.
Specificity of Early Childhood Hyperphagia Profiles in Neurogenetic Conditions.
Am J Intellect Dev Disabil
; 129(3): 175-190, 2024 May 01.
Artículo
en Inglés
| MEDLINE | ID: mdl-38657964
13.
Using a Patient Portal to Increase Enrollment in a Newborn Screening Research Study: Observational Study.
JMIR Pediatr Parent
; 5(1): e30941, 2022 Feb 10.
Artículo
en Inglés
| MEDLINE | ID: mdl-35142618
14.
Parental coping with uncertainties along the severe combined immunodeficiency journey.
Orphanet J Rare Dis
; 17(1): 390, 2022 10 27.
Artículo
en Inglés
| MEDLINE | ID: mdl-36303152
15.
Caregivers' assessment of meaningful and relevant clinical outcome assessments for Sanfilippo syndrome.
J Patient Rep Outcomes
; 6(1): 40, 2022 Apr 25.
Artículo
en Inglés
| MEDLINE | ID: mdl-35467223
16.
Expert Evaluation of Strategies to Modernize Newborn Screening in the United States.
JAMA Netw Open
; 4(12): e2140998, 2021 12 01.
Artículo
en Inglés
| MEDLINE | ID: mdl-34964853
17.
Food and Non-Food-Related Behavior across Settings in Children with Prader-Willi Syndrome.
Genes (Basel)
; 11(2)2020 02 17.
Artículo
en Inglés
| MEDLINE | ID: mdl-32079283
18.
Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder.
Disabil Health J
; 13(4): 100927, 2020 10.
Artículo
en Inglés
| MEDLINE | ID: mdl-32360031
19.
"Just tell me what's going on": The views of parents of children with genetic conditions regarding the research use of their child's electronic health record.
J Am Med Inform Assoc
; 27(3): 429-436, 2020 03 01.
Artículo
en Inglés
| MEDLINE | ID: mdl-31913479
20.
Connecting Caregivers to Support: Lessons Learned From the VA Caregiver Support Program.
J Appl Gerontol
; 39(4): 368-376, 2020 04.
Artículo
en Inglés
| MEDLINE | ID: mdl-30658547