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.
View More Opportunities
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.
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.
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.
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.
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.