Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome.
This study is family friendly in many ways; all study visits are completed via telehealth at home, the study team sends you all the materials you need, and study visits can be scheduled around your busy lifestyle, including nights and weekends.
Participation
Who can participate?
Children under 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. Families complete study activities three times, six months apart. 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 $60 in Amazon gift cards per round of assessment activities ($180 total). You will also receive a brief developmental snapshot report of your child’s behavior as observed during the study.
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