Tracking scoliosis and spine surgery outcomes for people with spina bifida
Official title: Penn State Spina Bifida Clinic Registry
Funded at Pennsylvania State Univ Hershey Med Ctr · NIH-11423403 · Data updated 2026-11-12
This project uses clinic registry data to look at when people with myelomeningocele need scoliosis surgery and what happens to them afterward.
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, 2026 |
| Funding year | 2023 |
| Award (this year) | $80,000 |
| NIH project number | 6U01DD001270-05M002 |
| Project ID | NIH-11423403 on NIH RePORTER |
Who could benefit from this research
✓Could help
People of any age with myelomeningocele (a form of spina bifida) who have scoliosis or are being considered for scoliosis or tethered cord surgery are the most relevant candidates for this work.
✕Less likely to help
People without myelomeningocele, without scoliosis, or not facing spine or tethered cord procedures are unlikely to be directly affected by this project.
What this research studies
You will see that the team is using data from the Penn State Spina Bifida Clinic and the National Spina Bifida Patient Registry to learn about scoliosis and related surgeries in children and adults with myelomeningocele. They will count how often patients have scoliosis correction and compare rates across clinics while accounting for age, lesion level, and walking ability. The researchers will examine links between scoliosis surgery and other neurological or urological issues such as hydrocephalus, Chiari malformation, syringomyelia, and tethered cord. They will specifically compare outcomes after scoliosis repair in people who did and did not have tethered cord release first to see if that prior surgery changes neurological or bladder/bowel outcomes.
Why it matters
Potential benefit: Results could help doctors decide whether tethered cord release should be done before scoliosis surgery and reduce the risk of neurological or urological worsening after spine surgery.
How similar studies have gone: Previous registry analyses and clinical reports have examined scoliosis in spina bifida, but the specific question of whether tethered cord release before scoliosis repair prevents neurological or urological decline remains incompletely answered.
Where this research is happening
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Pennsylvania State Univ Hershey Med Ctr
Hershey, United States Active
Researchers
- Principal investigator: Dias, Mark Steven — Pennsylvania State Univ Hershey Med Ctr
- Study coordinator: Dias, Mark Steven
Related research
Other NIH-funded projects on the same topics.
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Improving care and outcomes for people living with spina bifida in Wisconsin
A patient-friendly project aims to improve everyday care and health outcomes for people with spina bifida in Wisconsin.
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The National Spina Bifida Patient Registry at University of Pittsburgh
A national registry project at the University of Pittsburgh aims to collect and organize information about people with spina bifida to improve care.
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Improving Care and Outcomes for People Living with Spina Bifida
A patient-friendly project aims to improve how people with spina bifida are cared for and how well they do over time.
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Scoliosis and neurosurgical factors in myelomeningocele: a clinic registry study
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.
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UMPIRE: Better Urologic Care for Babies with Spina Bifida
This grant tests how to best protect kidney function in newborns with spina bifida by comparing and refining urologic care practices across multiple hospitals.
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Spina Bifida Collaborative Care Network to Improve Outcomes
A national program is expanding coordinated care networks and a patient registry to help people with Spina Bifida get better, more consistent care.
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.