Melissa Raspa

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

Psychometric assessment of the Rett syndrome caregiver assessment of symptom severity (RCASS)

Latent class analysis identifies distinctive behavioral subtypes in children with fragile x syndrome

Insight and recommendations for fragile x-premutation-associated conditions from the fifth international conference on FMR1 premutation

Research gaps in fragile x syndrome: An updated literature review to inform clinical and public health practice

The International Fragile X Premutation Registry: Building a resource for research and clinical trial readiness

Parental coping with uncertainties along the severe combined immunodeficiency journey

Severe combined immunodeficiency: Knowledge and information needs among healthcare providers

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

Outreach to new mothers through direct mail and email: Recruitment in the Early Check research study

Emergence of developmental delay in infants and toddlers with an FMR1 mutation

A voluntary statewide newborn screening pilot for spinal muscular atrophy: Results from early check

Barriers and facilitators to genetic service delivery models: Scoping review

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

A psychometric evaluation of the Motor-Behavioral Assessment Scale for use as an outcome measure in Rett syndrome clinical trials

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

Information and emotional support needs of families whose infant was diagnosed with SCID through newborn screening

Decisional capacity for informed consent in males and females with fragile X syndrome

"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