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?
3–4 year old (36-60 months) boys and girls 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.
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.
View More Opportunities
Study to Learn About the Cognitive Profile of Children with a Full Mutation of Fragile X
An Alliant International University clinical psychology doctoral candidate is conducting a research study to learn about the cognitive profile of children with a full mutation of Fragile X. Males and transgender females between the age of 8 and 12 may be eligible to participate.
Parent Survey: Children’s Behavioral Strengths and Challenges
The MIND Group at the University of Minnesota is conducting a survey for parents of children with Fragile X syndrome to learn about how genetic and neurodevelopmental differences impact behavioral strengths and challenges. Parents of 3–17 year old children living with Fragile X are eligible to participate.
Study: Language Environment Analysis Project (LEAP)
Purdue University is conducting a research study to learn about language and social communication development in Fragile X syndrome. Children ages 3–4 years (36–60 months) with the full mutation may be eligible to participate.
Survey: Medical and Mental Needs of Families Living with Fragile X
The University of Kansas Medical Center is conducting a survey to learn about the medical and mental health care needs of individuals and families affected by Fragile X syndrome, premutation carriers, and undiagnosed family members. Persons 18 years and over may be eligible.
Purdue Early Childhood Study – PANDABox
Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Boys and girls ages 6-18 months with the full mutation may be eligible to participate.
Fragile X Premutation Carrier Study at University of Kansas
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with premutations of the Fragile X gene, FMR1. Individuals ages 50–80 with the FMR1 gene premutation with or without FXTAS may be eligible to participate.
