Personalized surgery for sleep apnea in children with Down syndrome
Official title: Treatment of Obstructive Sleep Apnea with Personalized Surgery in Children with Down Syndrome (TOPS-DS)
Funded at Oregon Health & Science University · NIH-10972917 · Data updated 2026-11-12
This trial will see if using sleep endoscopy to guide personalized airway surgery helps children with Down syndrome who have obstructive sleep apnea.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Oregon Health & Science University NIH-funded |
| Lab location | 1 site (Portland, United States) |
| Project start | September 7, 2022 |
| Project end | August 31, 2028 |
| Funding year | 2025 |
| Award (this year) | $1,265,140 |
| NIH project number | 4R33HL165345-03 |
| Project ID | NIH-10972917 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children with Down syndrome who have diagnosed obstructive sleep apnea and are being considered for surgical treatment (typically pediatric patients referred for airway surgery).
✕Less likely to help
Children without Down syndrome, adults, or kids whose OSA is mild and managed without surgery or who cannot undergo anesthesia are unlikely to benefit from this trial.
What this research studies
If my child joins, they would be randomly assigned to either the usual adenotonsillectomy or a personalized surgical plan guided by drug-induced sleep endoscopy (DISE). DISE uses a small scope while the child is sedated to watch exactly where the airway narrows or collapses. Surgeons then tailor additional procedures based on those observations rather than using a one-size-fits-all operation. Children will be followed after surgery to track sleep breathing, symptoms, and recovery over time.
Why it matters
Potential benefit: If successful, the personalized approach could reduce persistent OSA after surgery and improve sleep and breathing in children with Down syndrome.
How similar studies have gone: Several small case series suggest DISE-directed personalized surgery can help children with Down syndrome, but no prior randomized trials have confirmed this approach.
Where this research is happening
-
Oregon Health & Science University
Portland, United States Active
Researchers
- Principal investigator: Lam, Derek J — Oregon Health & Science University
- Study coordinator: Lam, Derek J
Related research
Other NIH-funded projects on the same topics.
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Personalized DISE-guided surgery for sleep apnea in children with Down syndrome
A personalized surgical approach guided by DISE sleep-endoscopy is being tested to better treat sleep apnea in children with Down syndrome who don’t always improve after standard surgery.
-
Oxygen therapy for kids with Down syndrome and sleep apnea
A study tests whether low-flow oxygen helps children with Down syndrome and moderate to severe obstructive sleep apnea who have not benefited from first-line surgery.
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Low-flow nighttime oxygen for children and teens with Down syndrome and sleep apnea
This project tests whether nightly low-flow oxygen helps children and adolescents with Down syndrome who have moderate to severe obstructive sleep apnea.
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Medications to treat sleep apnea and boost thinking in children with Down syndrome
This project gives a combination of two commonly used medicines, atomoxetine and oxybutynin, to children with Down syndrome who have obstructive sleep apnea to see if it helps them sleep better and think more clearly.
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Testing oxygen therapy for children with Down Syndrome and sleep apnea
This study is looking at whether low-flow oxygen therapy can help kids and teens with Down Syndrome who have trouble breathing while sleeping, aiming to see if it can make them feel better and improve their daily lives, especially for those who haven't found relief with other treatments.
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Using positive airway pressure to treat sleep apnea in children with Down syndrome
This study is looking at how well a special breathing machine called PAP therapy helps kids with Down syndrome and sleep apnea, by comparing a six-month hands-on support program to regular care, to see which helps them stick with the treatment better and feel better overall.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.