As a service to the X and Y variation community, AXYS is pleased to provide the following list of studies that individuals, parents or families may want to consider joining. All listed studies have been approved by their respective Institutional Review Boards (IRB), and a copy of that approval is on file with AXYS. The announcements and parties conducting and sponsoring the research meet guidelines established by AXYS regarding relevancy and appropriateness to X and Y variations. AXYS takes no position and makes no claims as to the potential benefits of the studies, including those studies involving medications, and cannot be responsible for any outcomes, lack of outcomes or unintended side effects. If interested in participating in this research, please use the contact information in the announcement.
Name/Purpose of Study: The ASSERT: All StakeholderS Engaged in Research Together project seeks to engage people on the autism spectrum, with Down syndrome, or with other intellectual or developmental disabilities (IDD) along with caregivers, clinicians, and researchers. The goal is to build an online learning community where these stakeholders learn about research together in a way that is collaborative and multidirectional (all learners gain knowledge from each other).
X and Y variations being studied: All
Genders being studied: All
Age Range: 18+
Other eligibility requirements: People ages 18 or older on the autism spectrum, with Down syndrome, or with IDD; caregivers (including adult siblings) of a person on the autism spectrum, with Down syndrome, or with IDD; clinicians who care for those on the autism spectrum, with Down syndrome, or with IDD; and researchers engaged in research focused on the autism spectrum, Down syndrome, or IDD. Must have internet access and a web-capable device.
Name/Purpose of Study: Voices of Patients for Clinical Excellence Study (VOICES)
X and Y variations being studied: 47,XXY (Klinefelter syndrome)
Genders being studied: Male
Age Range: Individuals with Klinefelter Syndrome 15-30 years of age; parents or legal guardians of youth (ages 12-18) with Klinefelter Syndrome
Other eligibility requirements: Participants must have a diagnosis of Klinefelter Syndrome, access to the Internet and a device capable of web browsing. Participants must be able to read and understand English.