Family-based self-management support for youth with spina bifida
Official title: Family Assessment and Momentary Evaluation (FAME): Enhancing Self-Management in Youth with Spina Bifida
Funded at Loyola University Chicago · NIH-11298723 · Data updated 2026-11-12
A patient-facing program designed to help children with spina bifida and their caregivers manage daily health tasks at home.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Loyola University Chicago NIH-funded |
| Lab location | 1 site (Maywood, United States) |
| Project start | June 15, 2026 |
| Project end | March 31, 2031 |
| Funding year | 2026 |
| Award (this year) | $689,428 |
| NIH project number | 1R01HD118154-01A1 |
| Project ID | NIH-11298723 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children with spina bifida (including 0-11 and up to 15 years old) and their caregivers who are involved in daily self-management tasks.
✕Less likely to help
Families without access to home environments or who do not engage in daily self-management activities may see fewer benefits.
What this research studies
This grant asks how families supervise and share responsibilities for daily care tasks like bladder and bowel management in kids with spina bifida, aiming to tailor strategies to each child’s age and abilities. Researchers will observe real-life routines at home to identify what helps or hinders self-management and how family beliefs influence care. The study will involve families from Loyola University Chicago to understand how to transfer responsibility from caregiver to child as they grow. Expect a family-centered approach that could lead to practical tools and guidance for day-to-day management.
Why it matters
Potential benefit: If successful, families could have evidence-based strategies to improve health outcomes and quality of life for children with spina bifida.
How similar studies have gone: Previous work suggests that family dynamics and routines influence chronic-condition self-management, but real-time, home-based insights are limited and findings may be novel.
Where this research is happening
-
Loyola University Chicago
Maywood, United States Active
Researchers
- Principal investigator: Ridosh, Monique — Loyola University Chicago
- Study coordinator: Ridosh, Monique
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.
-
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.