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
Our Most Recent Opportunities
Study: Mechanisms and biomarkers of disease progression in Fragile X-associated tremor/ataxia syndrome (FXTAS)
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation. Males and females ages 50-80 living with the Fragile X premutation, with or without FXTAS, may be eligible to participate. The study includes remote & in-person visits at the University of Kansas.
Exploring Potential Barriers to the Fragile X Syndrome Cascade Screening Process
Researchers at the University of Memphis and Cincinnati Children's Hospital Medical Center are conducting a research study exploring the relationship between barriers and the FXS screening process among family members.
Grief and Bereavement Experiences of Children with Intellectual Disabilities
Researchers at the University of Maryland are looking to understand how children with Fragile X syndrome (FXS) and other intellectual disabilities grieve the loss of a loved one. If you are the parent or guardian of a child with FXS or another intellectual disability who has experienced the death of someone in their life when they were 5-17 years old, researchers want to talk to you.
Language Learning in Children: Vocabulary Acquisition in a Meaningful Context
The University of Washington's Neurodevelopmental Language and Learning (NeuDLL) Lab is conducting research addressing how children learn words in stories and the skills that support learning. Participation is remote and can be completed from home. Sessions are scheduled at your convenience.
Study: Recording the Experiences of Black and Hispanic Mothers who have Children with Fragile X Syndrome
Are you a Black or Hispanic woman raising a child with Fragile X syndrome? Researchers want to hear about your experiences. The South Carolina Family Experiences Lab is conducting 30-minute interviews to learn about the experiences of Black and Hispanic women raising a child with Fragile X syndrome. About the Study Who can participate? Black and Hispanic women of any age, who have a child with Fragile X syndrome, may [...]
Survey: What do you think about at-home research visits?
Dr. Schmitt and the Cincinnati Fragile X Center are conducting a survey to learn about potential barriers and advantages of conducting research visits in the home.