The language development lab at the UC Davis MIND Institute is conducting an online survey to shed light on the impact that COVID-19 has had on the services provided to families of individuals with neurodevelopmental disabilities, as well as on the role telehealth technology, like video visits, might have played during the pandemic. The project will also begin to assess the utility of new intervention technologies and approaches that might facilitate access to services in the future.
About the Survey
Who can participate?
If you are the parent or caregiver of an individual with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic, you may be eligible to participate.
What will happen in the study?
If you qualify and decide to be in this research study, you will be asked to complete a series of questionnaires via Qualtrics, an online interface.
You will be asked questions that will help us understand the impacts that the COVID-19 pandemic has had on your child’s access to services and your experiences with telehealth. Some questions will be aimed at understanding parent and family well-being following COVID-19-related changes.
It will take about 30 minutes to complete the questionnaires.
What are the good things that can happen from this research?
There is no direct benefit to you from taking part in this study. However, we hope that the information collected in this research will help us to provide optimized support to families in the future as well as inform policy decisions surrounding the use of telehealth.
What are the bad things that can happen from this research?
The risks of this research are minimal. Some of the questions might make you feel uncomfortable or mildly upset. You do not have to answer any questions you do not want to answer.
There may be risks we do not know about.
Our Most Recent Opportunities
Project WellCAST: Caregivers of Children with Fragile X Needed for a Research Study
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
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
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)
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.
Developing the Fragile X Syndrome-Health Index (FXS-HI): A Caregiver-Reported Outcome Measure
The Center of Health and Technology’s (CheT) Outcomes Division is conducting caregiver interviews to learn about and determine the most important symptoms to individuals with FXS to create an outcome measure for FXS.
Study: A Family Genetic Study of Autism and Fragile X Syndrome
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.