Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome.
Participation
Who can participate?
Children age 6–18 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 for three sets of activities over the next year. The following is a list of some of the assessments that will happen during the study:
- Online surveys
- Phone interviews
- Telehealth-based play sessions
- Day-long audio recordings of your child’s vocalizations
- Sharing diagnostic records
What are the good things that can happen from this research?
Development of a new telehealth-based platform for remotely monitoring early clinical risk factors in rare syndromes.
What are the bad things that can happen from this research?
Risks include fussiness during the telehealth session, skin irritation or reddening from heart rate monitor adhesive (similar to a band aid), and potential loss of confidentiality. You are welcome to take as many breaks as needed during the telehealth session, or opt out of any tasks. All data is stored in secure, HIPAA-compliant locations, and is deidentified 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 complete this survey?
Participants receive $55 per round of assessment activities. You will also receive a brief developmental snapshot report of your child’s behavior as observed during the study.
Our Most Recent Opportunities
Parent Survey: Literacy Skills in Children with Fragile X Syndrome
The Research in Neurodevelopmental Disabilities Lab at the Waisman Center at the University of Wisconsin-Madison is looking for parents of male or female children 6 to 17 years old with Fragile X syndrome for an online survey.
Study: Join the FORWARD Registry & Database
The FORWARD Registry is open to individuals with any type of Fragile X disorder, and the FORWARD Database is open to individuals with a full mutation (including mocaicism).
PIXI Study: Parent-Infant Fragile X Intervention
RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.
Study: Our Fragile X World Registry
Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.
Study: Cognition, Balance, and Walking Patterns in Males With a Premutation
Doctors at Rush University are researching cognition, balance, and walking patterns in people who carry a premutation in the Fragile X (FMR1) gene.
Fragile X Premutation Carrier Study at USC
The University of South Carolina is conducting a research study focusing on the range of language, social, and cognitive features that may be associated with variations on the FMR1 gene. Women age 35-75 who are carriers of the Fragile X premutation may be eligible to participate.
