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Article
Uncertainties experienced by parents of children diagnosed with severe combined immunodeficiency through newborn screening
April 01, 2024
Article
Psychometric assessment of the Rett syndrome caregiver assessment of symptom severity (RCASS)
March 01, 2024
Article
Adaptive skills of individuals with Angelman syndrome assessed using the vineland adaptive behavior scales, 2nd edition
August 15, 2023
Article
Use of a web-based portal to return normal individual research results in Early Check: Exploring user behaviors and attitudes
June 01, 2023
Article
Parental coping with uncertainties along the severe combined immunodeficiency journey
October 27, 2022
Article
Education and consent for population-based DNA screening: A mixed-methods evaluation of the Early Check Newborn Screening Pilot Study
May 12, 2022
Article
Attitudes about analytic treatment interruption (ATI) in HIV remission trials with different antiretroviral therapy (ART) resumption criteria
May 01, 2022
Article
Severe combined immunodeficiency: Knowledge and information needs among healthcare providers
February 21, 2022
Article
Using a patient portal to increase enrollment in a newborn screening research study: Observational study
February 10, 2022
Article
Expert evaluation of strategies to modernize newborn screening in the United States
December 29, 2021
Article
Outreach to new mothers through direct mail and email: Recruitment in the Early Check research study
May 01, 2021
Article
Emergence of developmental delay in infants and toddlers with an FMR1 mutation
May 01, 2021
Article
Developmental skills of individuals with Angelman Syndrome assessed using the Bayley-III
January 30, 2021
Article
A psychometric evaluation of the Motor-Behavioral Assessment Scale for use as an outcome measure in Rett syndrome clinical trials
November 01, 2020
Article
Information and emotional support needs of families whose infant was diagnosed with SCID through newborn screening
May 06, 2020