Clinical coordination for Chiari malformation and syringomyelia
Clinical Core
People with Chiari malformation and syringomyelia join to share clinical, imaging, genetic, and quality-of-life information to help improve diagnosis and care.
Quick facts
| Grant type | P01 program project |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Washington University NIH-funded |
| Lab location | 1 site (Saint Louis, United States) |
| Project ID | NIH-11182743 on NIH RePORTER |
What this research studies
If you take part, study staff will screen and enroll you, obtain consent, and collect your medical records, imaging, and patient-reported outcomes including quality-of-life measures. You may complete brief neurobehavioral tests (NIH Toolbox) and questionnaires, and provide samples or data for a genetics database and comorbidity registry. The program links a multicenter registry, an ongoing randomized surgical trial (posterior fossa decompression with or without duraplasty), and prospective pediatric and adult cohorts so data from many centers are combined. All information is coded, anonymized, and stored following standard procedures to protect your privacy.
Who could benefit from this research
Good fit: Ideal candidates are people diagnosed with Chiari type I malformation (with or without syringomyelia), including children aged 9–18 and adults aged 19 and older treated at participating centers.
Not a fit: People without Chiari malformation or those ineligible for the specific surgical trial or unable to provide consent are unlikely to benefit directly from participation.
Why it matters
Potential benefit: If successful, this work could clarify how Chiari affects the brain, link genetic and imaging findings to symptoms, and guide better surgical and clinical decisions.
How similar studies have performed: Related multicenter registries and prior trials comparing decompression with and without duraplasty exist, but large integrated genetic and longitudinal outcome efforts like this are newer and aim to fill remaining gaps.
Where this research is happening
Saint Louis, United States
- Washington University — Saint Louis, United States (Active)
Researchers
- Principal investigator: Limbrick, David Delmar — Washington University
- Study coordinator: Limbrick, David Delmar
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.