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
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Single-Dose Study for Adult Men with FXS
Cincinnati Children's Hospital Medical Center is looking for males ages 18-40 with FXS to participate in a single-dose clinical trial that is studying a drug called Gaboxadol.
Study: Somatic symptom development in 6-12 year old females with an FMR1 mutation (SoS Study)
Researchers at the New York State Institute for Basic Research are conducting a study to better understand the development of physical (somatic) symptoms in females living with and without an FMR1 gene variation.
Study: Web Intervention for Parents of Youth with Genetic Syndromes (WINGS)
Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are currently conducting a fully-virtual research study that is testing two telehealth interventions that are designed to help parents of children with genetic syndromes and intellectual disabilities gain strategies to manage challenging behaviors.
Neural Underpinnings of the Relationship Between Cognition and Gait Dysfunction in Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
Movement disorders researchers at Rush University Medical Center are conducting a research study to learn about brain activation in people living with FXTAS during tasks like walking and thinking. This study is currently recruiting adults ages 50+ who are living with FXTAS.
Pharmacogenomics and the Fragile X Community: Interest and Prior Understanding
Researchers at the University of Alabama are looking for members of the FX community to take their online survey so they can explore the knowledge & opinions of the FXS community on pharmacogenomic testing.