Parents of children 6 to 17 years old with Fragile X syndrome are needed for an online survey.
The Research in Neurodevelopmental Disabilities Lab at the Waisman Center at the University of Wisconsin-Madison is conducting an online survey to learn more about the literacy skills and the home literacy environment of children and adolescents with intellectual and developmental disabilities, including Fragile X syndrome.
About the Survey
Who Can Participate?
Parents of boys and girls with Fragile X syndrome ages 6 to 17 years old are eligible to participate.
What will happen in the study?
You will be asked to provide background information about your child (e.g., age, family characteristics, diagnosis) and answer questions about your child’s reading and writing abilities, their literacy experiences at home and at school, and your experiences with providing literacy instruction to your child. Your participation will require approximately 25–45 minutes and is done completely online. The survey may be completed in more than one sitting, but must be completed within a 7-day period.
What are the good things that can happen from this research?
The potential benefits of this research to society include gaining a better understanding of:
- Literacy development of children with various intellectual and developmental disabilities, including Fragile X syndrome.
- Children’s home literacy environments.
- Parental attitudes toward literacy instruction.
Understanding this could also help inform the development of literacy interventions and curriculum for children with various intellectual and developmental disabilities.
What are the bad things that can happen from this research?
There are minimal risks for participating in this research. However, there is the risk of breach of confidentiality as you may reveal personal, sensitive, or identifiable information when responding to open-ended questions. To safeguard against this, all identifying information will be removed from the research record as soon as possible and any report of this research to the public will not include any identifying information. Survey data will be kept on a secure server on campus at the University of Wisconsin-Madison that is password protected, and backup copies will be kept on an external hard drive that is stored in a locked cabinet in the principal investigator’s lab. Only individuals directly involved with the research study will have access to this data.
Will I be paid to complete this survey?
Approximately 25–45 minutes.
Yes, but it must be completed within seven days.
Yes. No direct identifying information will be collected from the survey, including participants’ names and birthdates. In the event that personal, sensitive, or identifiable information is provided by the participant when responding to open-ended questions, it will be removed from the research record as soon as possible.
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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