The Center for Autism Research Excellence and the Center for Systems Neuroscience at Boston University are conducting a research study to explore decision-making and sensory perception in adolescents. The study aims to enroll individuals living with Fragile X syndrome (FXS) and their siblings to play a space-themed videogame.
About the Study
Who can participate?
Adolescents ages 11-21 living with Fragile X syndrome (FXS) and their siblings ages 11-21 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 a one-time, online session that involves a fun, space-themed video game. The session will take anywhere from 10 to 40 minutes to complete. The study also consists of questionnaires to be completed by the parent/caregiver.
What are the good things that can happen from this research?
Participants will receive no direct benefits from the study.
What are the bad things that can happen from this research?
The primary risk to participants is the potential breach of confidentiality. To mitigate this risk, all personal and sensitive information will be securely stored and accessible only to authorized personnel. Each participant will be assigned a unique study ID, and a separate, securely stored document will link the IDs to participants’ names. Only authorized personnel will have access to this key. Data will be encrypted and stored on secure servers with restricted access.
Additionally, some of the questionnaire items may be emotionally challenging for parents or guardians to answer. Every effort will be made to ensure that each testing session is enjoyable and as stress-free as possible. Researchers will be trained to reduce anxiety and distress by providing encouragement and creating a supportive, non-stressful environment for both participants and parents/guardians.
There may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
Individuals will receive one $50 Amazon e-gift card for their participation.
Interested in Participating?
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