Parent Administered Neurodevelopmental Assessment6-18 month old boys and girls with the full mutation needed for a research study

 

Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome.

Who can participate? 

Boys and girls ages 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? 

You will receive a brief developmental snapshot report of your child’s behavior as observed during the study.

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 be in this research study? 

Participants receive $55 per round of assessment activities.

If you arrived on this page through a MyFXResearch Portal search, you can close this window and return to your filtered results. Or start a new search here.
View More Opportunities

View All

Purdue Early Childhood Study – PANDABox

6-18 month old boys and girls with the full mutation needed for a research study   Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Who can participate?  Boys and girls [...]

Rush University FXTAS Exercise Study

Have you been diagnosed with FXTAS and want to participate in an exercise trial? See the below flyer from Dr. O’Keefe’s lab at Rush University for details. View More Opportunites VIEW ALL [...]

Study: Family Relationships and Parenting of Children with FXS

The UC Davis MIND Institute is currently recruiting study research participants. The study’s goal is to better understand the ways in which characteristics of mothers and fathers and relationships within the family influence the language learning environment of young boys with Fragile X syndrome.