Purdue University is conducting a research study to learn about how genetic, biological, nutritional, and environmental information relates to health and development in Fragile X syndrome.
About the Study
Who can participate?
36- to 60-month-old 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 one to three months. The following is a list of some of the assessments that will happen during the study:
- Online survey about your family and your child.
- Parent interview conducted via phone.
- Home-based environment and biology samples.
- Optional play-based assessment conducted via video technology.
- Optional 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 de-identified when possible. All researchers accessing your data have been trained to handle sensitive information.
Will I or my child be paid to complete this survey?
Participants receive between $60 and $100 for completing all research activities.
Interested in Participating?
If you’d like to learn more about this research opportunity, please fill out the form to send your contact information to the POcKIT study team at Purdue University.
Our Most Recent Opportunities
Study: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.
Survey: Fragile X Nutrition Survey
The University of Wisconsin-Madison is conducting a survey to learn about associations between infant feeding and neurodevelopment in children with Fragile X syndrome.
Clinical Trial: Phase 2B/3 Studies of BPN14770 in Fragile X syndrome
Tetra Therapeutics is conducting a two randomized, placebo-controlled studies of BPN14770/zatolmilast to learn about the experimental drug’s safety and efficacy for males ages 12-45.
IMPACT-FXS: Investigating Multiple Pathways And Combined Treatments for FXS
Healx is conducting a Phase 2, placebo-controlled study in adolescent and adult males with fragile X syndrome (FXS). The purpose of this study is to confirm whether Healx's drug candidates are safe and work as intended to reduce symptoms of FXS.
Survey: Developing a Gold Standard for Tracking Adult Functional Outcomes in Developmental Disabilities (AFS Study)
University of Pittsburgh is conducting this research to develop the Adult Functioning Scale (AFS), a new survey being designed to capture outcomes in the areas of social functioning, employment, independence, and satisfaction for individuals with various developmental disorders.
Study: Aging in Toolbox
Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.