Purdue University is conducting a research study to learn about language and social communication development in Fragile X syndrome.
About the Research Study
Who can participate?
Boys and girls ages 3–4 years old (36–60 months) with the full mutation may be eligible to participate.
What will happen in the study?
If the individual qualifies and decides to be in this research study, they will complete research activities at home and online for one visit over the next 1-2 weeks.
The following is a list of some of the assessments that will happen during the study:
- Online survey about your child.
- Parent interview conducted via video chat.
- Daylong audio recording of your child’s vocalizations.
What are the good things that can happen from this research?
You and your child will be contributing to the body of knowledge about early development in Fragile X syndrome. We do not ensure any personal benefit from your participation in this study.
NOTE: There may be changes to this study during this time. The study team will explain any changes to you.
What are the bad things that can happen from this research?
Risks include fatigue or stress from the length or content of the interviews, discomfort while wearing the audio recorder, and potential loss of confidentiality.
You are welcome to take as many breaks as needed during the video chats and to opt out of any tasks, including the daylong audio recording. We also offer additional materials to help children adjust to wearing the recording materials. All data is stored in secure, HIPAA-compliant locations, and is deidentified (information that has been altered to remove certain data elements associated with an individual) when possible. All researchers accessing your data have been trained to handle sensitive information.
There may be other risks that we do not know about yet.
Will you/your child be paid to be in this research study?
Participants receive $65 for completing all research activities.
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.