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Search Results

Showing results 1 to 20 of 79.

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

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

February 01, 2024
Article

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

September 21, 2023
Article

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

January 01, 2023
Article

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

December 01, 2022
Article

Parental coping with uncertainties along the severe combined immunodeficiency journey

October 27, 2022
Article

Severe combined immunodeficiency: Knowledge and information needs among healthcare providers

February 21, 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

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

March 21, 2021
Article

Barriers and facilitators to genetic service delivery models: Scoping review

February 25, 2021
Article

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

December 01, 2020
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

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

October 01, 2020
Article

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

May 21, 2020
Article

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

May 06, 2020
Article

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

May 01, 2020
Article

"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

March 01, 2020