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
Assessing Parental/Guardian Experiences with Genetic Counseling for Fragile X Syndrome
Molly Mizenko, a student researcher in Indiana University’s Genetic Counseling Graduate Program, is conducting a survey to explore the experiences of parents and guardians who have received genetic counseling following their child’s diagnosis of Fragile X syndrome.
Study: Examining Factors that Influence Expectations for Individuals with an Intellectual or Developmental Disability (IDD)
Dr. Grace Francis from George Mason University is conducting an online survey to explore factors that affect the expectations for individuals with intellectual or developmental disabilities (IDD), including Fragile X syndrome (FXS), after they finish school.
Study: Identifying Translational Sleep Biomarkers in Autism
The Manoach Lab at Massachusetts General Hospital is conducting a research study to explore brain activity during sleep and sensory processing in individuals living with Fragile X syndrome (FXS).
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.