UC Davis Health Clinical Studies

Technology-Assisted Examination of the Language Environment

The goal of this research study is to better understand the child’s home language environment by investigating child and family characteristics that can contribute to the development of spoken language in children with fragile X syndrome (FXS). Specifically, we are interested in how maternal talk relates to child spoken language and how specific characteristics associated with FXS may contribute to language learning. Further, a large part of this project will focus on the feasibility of collecting multiple types of information from a distance using video teleconferencing. In the future, it is possible that information collected from this project will help us develop optimal treatment approaches for improving child spoken language and overall well-being in this population.

Behavioral
Any, age 6- 11 years old

Estudio sobre una prueba de lenguaje aplicada por los padres en el hogar para personas con Trastorno del Espectro Autista

Grupo de discusión para padres de chicos/as con Trastorno del Espectro Autista

• Estamos reclutando a padres de jóvenes con trastorno del espectro autista (TEA) de entre 6 a 23 años para participar en una sesión de discusión en grupo. • El objetivo de esta sesión de grupo es conocer la opinión de un grupo de padres de personas con TEA sobre un nuevo programa de capacitación. Este programa de capación está diseñado para ensenar a padres a evaluar las habilidades lingüistas de sus hijos desde la comodidad de sus hogares. • En el futuro, la prueba de lenguaje aplicada en el hogar puede hacer posible que las familias de habla hispana afectadas por TEA participen en estudios de tratamiento desde sus hogares sin la necesidad de desplazarse a la clínica.

Focus group
Any, age >18

Online Developmental Screening Study

Have you had a new baby? Learn about your baby's development!

Researchers at the UC Davis MIND Institute on the UC Davis Medical Center campus in Sacramento are conducting an online study tracking the development of infants from 6 to 36 months of age. The goal of the study is to help parents understand their child’s development and gain access to resources when needed. This study tests new online methods of tracking developmental milestones in babies. The UC Davis MIND Institute is a collaborative international research center, committed to the awareness, understanding, prevention and care of neurodevelopmental disorders.

Longitudinal screening study
Any, age 6 months

A Study of the Long-Term Safety and Tolerability of Experimental ZYN002 in Children and Adolescents With Fragile X Syndrome (FXS)

Volunteer for research at UC Davis and contribute to discoveries that may improve health care for you, your family, and your community!

Fragile X Syndrome (FXS) is a genetic condition caused by a mutation in the Fragile X mental retardation 1 (FMR1) gene. This mutation is thought to cause changes to the “endocannabinoid system.” This is a certain pathway in the central nervous system. Disruption in this pathway can lead to FXS symptoms such as: - mild to severe intellectual or developmental disability - speech and language difficulties - behavioral, social and emotional difficulties. Cannabidiol (CBD) is part of the Cannabis/Marijuana plant. However, it does not have the same effects on the brain that recreational marijuana has. It may affect the endocannabinoid pathway. The Drug Product ZYN002 is a pharmaceutically manufactured CBD. It is being developed as a clear gel that can be applied to the skin (called transdermal delivery). This provides consistent, controlled levels of CBD in the blood when it is given once or twice a day. The purpose of this study is to evaluate the long-term safety, tolerability and effectiveness of the experimental drug ZYN002. It will be used in the treatment of symptoms of Fragile X Syndrome (FXS). There are currently no FDA approved medications shown to treat FXS. ZYN002 is an experimental treatment. This means that it is not approved by the FDA and must be tested to see if it is an effective treatment.

Drug study, Phase [/2/,/ /3/]
Any, age 3 to 18 years old

Telehealth study about a parent-implemented language test for individuals with Autism Spectrum Disorder

Estudio de telesalud sobre una prueba de lenguaje aplicada por los padres en el hogar para personas con Trastorno del Espectro Autista

We are now recruiting parents along with their sons/daughters with ASD for a new study! The study aims to teach parents to administer a spoken language test to their sons/daughters in their homes via telecommunication technology (i.e. Skype). We also will be adapting the language test for use with Spanish-speaking families. Therefore, we are recruiting both families who primarily speak Spanish as well as families who primarily speak English with their children. Estamos reclutando padres junto con sus hijos/as con TEA para un nuevo estudio! El objetivo del estudio es enseñar a padres a dar una prueba de lenguaje a sus hijos/hijas en sus hogares a través de las tecnologías de telecomunicaciones (ej., Skype). También adaptaremos la prueba al español. Por lo tanto, estamos reclutando tanto a familias que hablen principalmente inglés en casa con sus hijos como a familias que hablen principalmente español con sus hijos.

outcome measures/ medidas de resultado
Any, age 6 to 23

Study on Language Development in Young Adults with Fragile X Syndrome

The goal of the study is to learn more about how certain abilities (e.g. memory), certain types of experiences (e.g. interactions with family), and biology affect language abilities in adulthood for both males and females with fragile X syndrome. We are also interested in understanding how these factors and language/literacy skills affect the abilities of these young adults to function independently. Such information will help us suggest ways to improve instruction, therapy, and support to help youth fragile X to successfully transition from school to the demands of adult life.

Behavioral
Any, age in, entering, or just out of last year of HS

In-Home Autism Study

Are you a parent of a child with Autism?

Researchers at the UC Davis MIND Institute are collaborating with the Hartwell Foundation, Stanford University and Case Western University to reach thousands of families who are managing the challenges of caring for a child with an Autism Spectrum Disorder diagnosis. As its name implies, Autism Spectrum Disorder (ASD) represents a spectrum of symptoms, behaviors and associated features that medical science generally refers to as autism. It is the goal of the "Kids First" initiative to create a detailed classification of ASD that will more accurately reflect each individual's behavior and personality. With this new approach, researchers will be able to dig beyond the surface features of the disorder, to enact personalized, targeted approaches for care and interventions that will be more successful than what is available today.

survey
Any, age 1-17
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