Long-term follow-up for people with brittle bone disease (osteogenesis imperfecta)
Project 1: Longitudinal Study of OI
Tracking the health, pain, mobility, dental and spine changes of people with osteogenesis imperfecta while collecting imaging and genetic data over time.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Baylor College of Medicine NIH-funded |
| Lab location | 1 site (Houston, United States) |
| Project ID | NIH-11173432 on NIH RePORTER |
What this research studies
You would join a multi-year follow-up program that aims to collect at least six years of data on each participant. The study uses regular questionnaires, clinical information, central reading of radiographs, and whole genome sequencing using a low-cost platform to build searchable datasets. The team is expanding attention to spine problems, women's health (including pregnancy), and oral health while continuing to monitor pain, mobility, bone density and growth. Data and samples will be used to power future research and help the rare bone community design better care and studies.
Who could benefit from this research
Good fit: People diagnosed with osteogenesis imperfecta of any age, especially those with rarer genetic forms who can provide medical information, imaging, and consent for genetic testing, are ideal candidates.
Not a fit: People without a diagnosis of OI or those with the more common COL1A1/COL1A2-related forms who are no longer being enrolled in later cycles may not be eligible or benefit from joining this enrollment phase.
Why it matters
Potential benefit: If successful, the project could clarify how OI affects people over time, identify genetic causes, and create data that helps design better treatments and trials.
How similar studies have performed: Earlier cycles of this same longitudinal study have already produced new insights about pain, quality of life, mobility, bone growth, dental issues, and pregnancy, so this work builds on demonstrated success.
Where this research is happening
Houston, United States
- Baylor College of Medicine — Houston, United States (Active)
Researchers
- Principal investigator: Sutton, Vernon R — Baylor College of Medicine
- Study coordinator: Sutton, Vernon R
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.