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Down Syndrome Research Group Resources
The Down Syndrome Research Group supports participants and other researchers by providing instructional resources that can help patients and families to have a clear understanding of what to expect in a research sleep study.
Videos
These CHOP-created videos follow a person with Down syndrome as they arrive at the sleep laboratory and prepare for a sleep study. Based on previous research studies conducted at CHOP, these videos can help a person with Down syndrome prepare for what to expect when participating in a sleep study.
- Part One: What to Expect During the Home Sleep Study Prep Visit : This video shows a trip to the hospital to get set up for a home sleep study
- Part Two: At Home Sleep Study Set Up : This video shows how patients and families get set up at home for a sleep study
Social Stories
Researchers and clinicians share social stories with patients and families as tools to help them understand expected behaviors in different social situations. A social story clearly outlines, step by step, what might happen during a doctor appointment or visit to a sleep laboratory.
Dr. Melissa Xanthopoulos created these social stories for in-lab sleep test setup and home sleep apnea testing setup. Researchers may contact the Down Syndrome Research Group team to request editable versions of the social stories for their own use.
National Down Syndrome Research
The National Institutes of Health supports efforts to gather information about people with Down syndrome to better understand their overall health.
DS-Connect: The Down Syndrome Registry
DS Connect is an online project that helps researchers learn about the health of people with Down syndrome. It also connects people with research that can help them. You can choose to join. It is a private set of online surveys, available in English and Spanish, that gathers basic health information about people with Down syndrome.
Visit the National Institutes of Health DS Connect: The Down Syndrome Registry to learn more about DS Connect.
The INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project
INCLUDE will study health conditions that affect people with Down syndrome and others, like Alzheimer's disease, autism, eye disease, celiac disease, heart problems, and diabetes.
Visit the National Institutes of Health INCLUDE Project to learn more about INCLUDE.
We are so thankful for everyone who helps with our research. We highly value participation of our families and offer tokens of appreciation and compensation for time and effort for many of our projects.