Sara Andrews

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Uncertainties experienced by parents of children diagnosed with severe combined immunodeficiency through newborn screening

State coordinator perceptions of linkages between newborn screening and early intervention

Effects of congenital Zika syndrome on feeding and growth: A longitudinal study

GM1-gangliosidosis: The caregivers' assessments of symptom impact and most important symptoms to treat

GM1-gangliosidosis: The caregivers’ assessments of symptom impact and most important symptoms to treat

Parental coping with uncertainties along the severe combined immunodeficiency journey

Caregivers' assessment of meaningful and relevant clinical outcome assessments for Sanfilippo syndrome

Preparing newborn screening for the future: A collaborative stakeholder engagement exploring challenges and opportunities to modernizing the newborn screening system

Using a patient portal to increase enrollment in a newborn screening research study: Observational study

Expert evaluation of strategies to modernize newborn screening in the United States

Patient experiences with a phone-based cardiovascular risk reduction intervention: Are there differences between women and men?

Preferences for accessing electronic health records for research purposes: Views of parents who have a child with a known or suspected genetic condition

Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder

Ethical, legal, and social issues related to the inclusion of individuals with intellectual disabilities in electronic health record research: Scoping review

Connecting caregivers to support: Lessons learned from the VA caregiver support program

Meaningful treatment outcomes for Sanfilippo syndrome: using a combination of focus groups and best-worst scaling to elicit and explore parents' priorities

"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

Food and non-food-related behavior across settings in children with Prader-Willi syndrome

Family caregiver use and value of support services in the VA Program of comprehensive assistance for family caregivers

Understanding women veterans' preferences for peer support interventions to promote heart healthy behaviors: A qualitative study