Improving care for autism, learning, sleep, and behavior issues in tuberous sclerosis
Clinical Trial Readiness for the Evaluation and Treatment of Neuropsychiatric Manifestations in Tuberous Sclerosis Complex
This project develops user-friendly tools, follows patients over time, and searches for sleep, sensory, and brain-activity markers to help people with tuberous sclerosis complex who have autism, intellectual disability, or other neuropsychiatric challenges.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Boston Children's Hospital NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project ID | NIH-11173360 on NIH RePORTER |
What this research studies
From a patient's perspective, the team will refine and validate a self-administered TAND checklist you can use to report thinking, behavior, sleep, and sensory concerns. They will follow people with TSC over time to map mental health symptoms and patterns of psychiatric medication use. The researchers will study sleep problems and sensory processing differences and look for electrophysiological brain markers that relate to autism and intellectual disability in TSC. All of this work is meant to make future drug and behavioral treatment trials for TSC-related neuropsychiatric problems possible and better targeted.
Who could benefit from this research
Good fit: People of all ages with a clinical diagnosis of tuberous sclerosis complex who experience autism, intellectual disability, sleep or sensory difficulties, or other neuropsychiatric symptoms are the intended participants.
Not a fit: People who do not have tuberous sclerosis complex or who have no neuropsychiatric concerns are unlikely to receive direct benefit from this project.
Why it matters
Potential benefit: If successful, the work could speed development of treatments tailored to the thinking, behavior, sleep, and sensory issues faced by people with TSC.
How similar studies have performed: Early pilot work on the TAND checklist and some electrophysiological markers has shown promise, but few large studies have yet produced clear treatment successes for TAND.
Where this research is happening
Boston, United States
- Boston Children's Hospital — Boston, United States (Active)
Researchers
- Principal investigator: Krueger, Darcy — Boston Children's Hospital
- Study coordinator: Krueger, Darcy
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 below.