Opportunities for Families Archives

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

By Anna De Sonia|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.

Study: Recording the Experiences of Black and Hispanic Mothers who have Children with Fragile X Syndrome

By Anna De Sonia|2024-02-21T11:11:11-05:00Feb 21, 2024|Blog, Opportunities for Families, Research|

Are you a Black or Hispanic woman raising a child with Fragile X syndrome? Researchers want to hear about your experiences. The South Carolina Family Experiences Lab is conducting 30-minute interviews to learn about [...]

Survey: What do you think about at-home research visits?

By Hilary Rosselot|2023-11-20T18:13:16-05:00Oct 26, 2023|Opportunities for Families|

Dr. Schmitt and the Cincinnati Fragile X Center are conducting a survey to learn about potential barriers and advantages of conducting research visits in the home.

Study: Single Dose Study for Adult Women and Men with FXS

By Hilary Rosselot|2023-09-06T12:14:47-04:00Sep 5, 2023|Blog, Opportunities for Families|

Dr. Craig Erickson at Cincinnati Children’s Hospital Medical Center is conducting a clinical trial to learn about if medication can change the brain’s response to sound, which may be abnormal in FXS.

Project WellCAST: Caregivers of Children with Fragile X Needed for a Research Study

By Hilary Rosselot|2023-09-22T10:00:02-04:00Jul 7, 2023|Opportunities for Families|

The Kelleher Lab at Purdue University is conducting an NIH-funded clinical trial called Project WellCAST. Project WellCAST aims to understand how to best support caregivers of children with rare neurogenetic conditions, including Fragile X syndrome.

Study: Language, executive function, and quality of life of those with the Fragile X premutation

By Hilary Rosselot|2023-06-27T18:20:31-04:00Jun 22, 2023|Opportunities for Families|

Researchers at the Waisman Center at UW-Madison are recruiting adults with the Fragile X premutation for a study on language, executive function, and quality of life.

Views and Experiences of Caregiver Coaching in Early Childhood Speech-Language Services: A Survey of Caregivers and Speech-Language Pathologists

By Hilary Rosselot|2023-06-12T16:27:17-04:00Jun 12, 2023|Opportunities for Families|

The Research in Developmental Disabilities and Language Lab at The University of Wisconsin-Madison is conducting a survey to learn about you and your child’s experiences in speech therapy during early childhood.

Study: Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders (BEOND)

By Hilary Rosselot|2023-06-09T08:24:43-04:00Jun 9, 2023|Opportunities for Families|

The Cerebra Network for Neurodevelopmental Disorders is conducting a survey to learn more about behaviour, social functioning, sleep, hyperactivity, mood, physical and mental health, as well as family functioning and wellbeing, and how these change over time.

Survey: Developing a Caregiver-Reported Survey in Neurodevelopmental Disorders: The Neurodevelopmental Disorder-Health Index (NDD-HI)

By Hilary Rosselot|2024-01-23T08:49:24-05:00May 24, 2023|Opportunities for Families|

The Center of Health and Technology’s (CheT) Outcomes Division is conducting is conducting a survey to learn about [the most prevalent and impactful symptoms of FXS that the individual experiences, as reported by the caregiver.

Study: A Family Genetic Study of Autism and Fragile X Syndrome

By Hilary Rosselot|2023-05-15T14:12:00-04:00Feb 16, 2023|Opportunities for Families|

The Neurodevelopmental Disabilities Lab at Northwestern University is conducting a research study to learn about how the genes involved in Fragile X syndrome may play a role in language development, cognitive differences, and more.

Study: Aging in Mothers who Carry the FMR1 Premutation

By Hilary Rosselot|2023-05-15T14:12:17-04:00Feb 15, 2023|Opportunities for Families|

The University of South Carolina is conducting a research study to learn about healthy aging in women who carry the FMR1 premutation.

Study: iBehavior- A Novel Behavior Tracking App Study for individuals with Fragile X syndrome

By Hilary Rosselot|2023-02-08T11:07:18-05:00Feb 8, 2023|Opportunities for Families|

The T-PAL Lab at the UC Davis MIND Institute is conducting a research study to learn about how we can best measure your child’s behavioral and cognitive functioning in their day-to-day life. Using an [...]

Study: Transitioning to Adulthood with Fragile X syndrome

By Hilary Rosselot|2022-11-15T11:07:23-05:00Nov 15, 2022|Opportunities for Families|

University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.

Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions

By Hilary Rosselot|2023-05-10T14:43:37-04:00Oct 24, 2022|Opportunities for Families|

Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.

Study: Language Study for Children and Adolescents with Fragile X syndrome

By Hilary Rosselot|2022-08-26T14:36:58-04:00Aug 26, 2022|Opportunities for Families|

Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.