Scoliosis and neurosurgical factors in myelomeningocele: a clinic registry study
Official title: Penn State Spina Bifida Clinic Registry
Funded at Pennsylvania State Univ Hershey Med Ctr · NIH-11616604 · Data updated 2026-11-12
This project uses registry data from Penn State’s Spina Bifida Clinic to understand how brain and spine-related issues influence when and why scoliosis surgery is needed in people with myelomeningocele.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Pennsylvania State Univ Hershey Med Ctr NIH-funded |
| Lab location | 1 site (Hershey, United States) |
| Project start | September 1, 2019 |
| Project end | August 31, 2027 |
| Funding year | 2023 |
| Award (this year) | $130,000 |
| NIH project number | 6U01DD001270-05M005 |
| Project ID | NIH-11616604 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with myelomeningocele who have been treated at the Penn State Spina Bifida Clinic and have registry data available on scoliosis and neurosurgical history.
✕Less likely to help
Patients without myelomeningocele or without scoliosis-related data in the registry may not directly benefit.
What this research studies
If you or your child has myelomeningocele and scoliosis, this registry study looks at past clinic data to see how conditions like hydrocephalus, Chiari malformation, syringomyelia, and tethered cord relate to scoliosis progression and the need for surgery. Researchers will examine how often scoliosis surgery occurs, how this varies between clinics, and how it is affected by age, lesion level, and walking ability. They will also explore whether spinal cord-related issues before surgery influence later neurological or urinary outcomes after scoliosis repair. The goal is to identify factors that may guide decisions about the timing and necessity of surgery in this population.
Why it matters
Potential benefit: Results could help doctors and families anticipate scoliosis progression and make better-informed surgical timing decisions for people with myelomeningocele.
How similar studies have gone: Registry analyses in congenital conditions have yielded actionable insights in the past, with potential for identifying practice patterns and outcomes in this population.
Where this research is happening
-
Pennsylvania State Univ Hershey Med Ctr
Hershey, United States Active
Researchers
- Principal investigator: O'neill, Brent R — Pennsylvania State Univ Hershey Med Ctr
- Study coordinator: O'neill, Brent R
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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.