About the Study
- Learn who can participate, what will happen in the study, and the good and bad things that could happen from this research.
- Once youʼve read through the information and youʼre interested in participating, please see our submission information.
Who can participate?
Children and adults (both males and females) of all ages with FXS may be eligible to participate.
The researchers have multiple in-home research projects that are currently recruiting, including:
- This study aims to test whether in-home data collection can allow us to collect a broader sample of participants (race, ethnicity, socioeconomic status, and rurality). It is looking to recruit participants who are interested in doing research with Cincinnati Children’s but have never visited us in person before.
- This study aims to test whether data collected in-home is as reliable as data collected in a research laboratory. It is looking to recruit participants who are willing to allow us to visit their homes and for them to visit Cincinnati Children’s.
What will happen in the study?
If you qualify and decide to participate in this research study, the study team will visit your home (or a nearby mutually agreed-upon location where the participant and caregiver will be most comfortable) for a 2-3 hour research visit. If you are willing and able, you may also qualify to visit the clinic for an in-person research visit.
The following is a list of some of the things the participants might be asked to do. Each visit is tailored to match the participant. They will be as flexible as the participant needs regarding the number of breaks taken. The study team has many supports (such as behavior training, visual schedules, token boards, social stories, and timers) in place to help participants with completing each of the following tasks:
- Parent questionnaires
- Attempt an electroencephalogram (EEG)
- For those completing study visits only in the home, we require an attempt at cognitive testing
What are the good things that can happen from this research?
There are no direct benefits to participation in this study. However, while being in this study may not help you right now, when the study is finished, researchers hope to know more about FXS and the reliability of data collected in-home. This may help others with FXS later on.
Cognitive testing reports are available upon request.
What are the bad things that can happen from this research?
There are minimal risks involved in the study. However, researchers will take all necessary precautions to minimize this risk.
Completing tasks may cause mild nervousness or fatigue (tiredness). EEG is a noninvasive way to measure brain activity that can be associated with sensory discomfort. The research staff is highly trained and will help minimize these risks.
There may be other risks that we do not know about yet.
Will participants be paid to complete this study?
Participants will receive $50 to $75 per visit, depending on the completed items.
Study Contact
Ashley Dapore
ashley.dapore@cchmc.org
513-517-1580