Why are we doing this research?
The University of Alberta is conducting a research study to learn about learning and memory in Fragile X syndrome.
Who can participate?
Anyone 4 years of age and older with Fragile X Syndrome may be eligible to participate. Participants must be able to read English or French as the game can be played in either language.
What will happen in the study?
If the individual qualifies and decides to be in this research study, they will play our online memory game two times, approximately 24 hours apart at their leisure.
The game is played from home on a touchscreen tablet device (a smartphone is too small). The game will take about 10-15 minutes to complete the first time and 5-10 minutes the second day.
What are the good things that can happen from this research?
Participants may get no benefits from taking part in this study, however, they may understand that they are contributing to the scientific knowledge that may lead to better understanding of how Fragile x Syndrome could affect memory formation and consolidation.
Cognitive testing will help in understanding the link between the impact of Fragile X Syndrome in memory function for the patients.
This research may help to provide a better understanding of neurodevelopmental disability and lead to better medical treatments in the future.
What are the bad things that can happen from this research?
The Memory Game is in the format of a game, and thus should not be stressful for participants to complete, however it may be stressful to some participants. They will be playing the game at home, on their own time, with no external examiner watching them (besides a caregiver), so there should be no/minimal stress, but it is a possibility and will depend on the person and how they react to things like this. For example, in the practice phase, the game gives feedback on responses. If a participant is getting incorrect answers, it may be stressful for them. Nonetheless, we think the stress will be no bigger than the one individuals will experience in regular daily activities such as schooling.
There may be other risks that we do not know about yet.
Will I/my child be paid to complete this survey?
No, unfortunately no payment will be offered to participants in this study.
How can I participate?
Please complete the form below to contact the study team.
If you have questions please contact Kerri Whitlock at khwhitlo@ualberta.ca
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