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
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
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Males between the ages of 18 and 30 years with a diagnosis of Fragile X syndrome (full mutation) may be eligible to participate.