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: Behavioral and Cognitive Inflexibility in Fragile X Syndrome
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.
Study: Adult Fragile X Premutation Carriers Needed for Registry
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.
Survey: Cannabidiol (CBD) Use with Fragile X Syndrome
A Mount Sinai Genetic Counseling graduate student is conducting a research study to learn about possible benefits and side effects of CBD supplements when used to treat FXS symptoms. This information will be obtained by using an anonymous online parental and caregiver survey. About the Survey Who can participate? Parents and caregivers caring for somebody with FXS who uses, or has used, CBD supplements may be eligible to participate. The parent or caregiver responding to the survey must be at least 18 years old. The individual with ...
Survey: How has the COVID-19 Pandemic Impacted Fragile X Families
Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic.
Exploring the Most Important Information for New Premutation Carriers
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey
Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X syndrome (FXS). This information will be valuable for current and future families when considering long-term supports, as well as for healthcare professionals, counselors, and policy makers. About the Study Who can participate? Parents and caregivers of adults with full mutation ...
