Healthy Sleep for Children With Down Syndrome (HELP-DS)
What is HELP-DS?
Healthy Sleep for Children with Down syndrome, also known as Trisomy 21, (HELP-DS) is a research study to observe breathing, sleep and behavior in children with DS before and after treatment for Sleep Disordered Breathing (SDB).
Why You and Your Child May Choose to Participate:
Your family may benefit by:
- Learning about the importance of SDB in children with DS
- Having your child evaluated for behavioral aspects that may be associated with SDB in children with DS
Who May Participate?
Children with Down syndrome aged 3-12.9 years who have not had their tonsils and adenoid removed.
What is Involved?
All children in the study will be studied before and after treatment for SDB. Treatment will be recommended as part of the clinical care and will not be part of this research. Removal of the tonsils and adenoid is the most common treatment for SDB. Children will be observed for 6 months after treatment.
All Children in the Study Will Receive:
- Overnight sleep study
- 3 daytime research study visits which will include:
- Behavioral testing
- Blood pressure monitoring
- Body measurements
- Caregivers questionnaires
- Actigraphy: A wrist watch-like device to wear at home for 7 days that measures your child's wake and sleep at home
- Teacher questionnaires
- Monthly telephone calls
Please Keep in Mind:
- Participation is voluntary.
- You are free to withdraw from this study at any time.
- We encourage you to ask questions, and express all of your concerns.
- Your child's health is important to us.
- We will reimburse you for your time and expenses.
If you are interested or want to learn more, please contact:
National Heart, Lung, and Blood Institute
National Institutes of Health