Opportunities for Families

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FXS TECH Study

By |2024-10-21T21:55:27-04:00Oct 21, 2024|Opportunities for Families|

Researchers at Rush University Medical Center are working on technology to improve how to identify and track progress in children living with autism and Fragile X syndrome. The study is currently recruiting children ages 18 months to 5 years, and 12-18 years.

Study: Web Intervention for Parents of Youth with Genetic Syndromes (WINGS)

By |2024-10-14T17:28:59-04:00Oct 14, 2024|Opportunities for Families|

Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are currently conducting a fully-virtual research study that is testing two telehealth interventions that are designed to help parents of children with genetic syndromes and intellectual disabilities gain strategies to manage challenging behaviors.

Study: Mechanisms and biomarkers of disease progression in Fragile X-associated tremor/ataxia syndrome (FXTAS)

By |2024-04-19T12:11:44-04:00Apr 19, 2024|Opportunities for Families|

The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation. Males and females ages 50-80 living with the Fragile X premutation, with or without FXTAS, may be eligible to participate. The study includes remote & in-person visits at the University of Kansas.

Grief and Bereavement Experiences of Children with Intellectual Disabilities

By |2024-07-03T09:41:52-04:00Mar 11, 2024|Opportunities for Families|

Researchers at the University of Maryland are looking to understand how children with Fragile X syndrome (FXS) and other intellectual disabilities grieve the loss of a loved one. If you are the parent or guardian of a child with FXS or another intellectual disability who has experienced the death of someone in their life when they were 5-17 years old, researchers want to talk to you.

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