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
Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
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.
Survey: Research Experiences in Fragile X Families
The Brain and Biomarker Lab at the University of Oklahoma is conducting a survey to learn about experiences with research, particularly biomedical research, in families with Fragile X syndrome (FXS).
Study: Language Study for Children and Adolescents with Fragile X syndrome
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.
Survey: Fragile X Nutrition Survey
The University of Wisconsin-Madison is conducting a survey to learn about associations between infant feeding and neurodevelopment in children with Fragile X syndrome.
Clinical Trial: Phase 2B/3 Studies of BPN14770 in Fragile X syndrome
Tetra Therapeutics is conducting a two randomized, placebo-controlled studies of BPN14770/zatolmilast to learn about the experimental drug’s safety and efficacy for males ages 12-45.
Study: Aging in Toolbox
Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.