Consortium for brittle bone disorders (osteogenesis imperfecta and related conditions)
Brittle Bone Disorders Consortium of the Rare Disease Clinical Research Network
This network collects medical data, genetic information, and biospecimens from people with brittle bones to help improve care and find better markers and treatments.
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-11173426 on NIH RePORTER |
What this research studies
If you join, the consortium coordinates multiple clinical protocols that follow people with brittle bone disorders over time, collect health records, imaging (like CT scans), and biological samples, and links those to genetic testing. The team combines data from many sites to map how different gene changes lead to fracture risk, pain, and other complications. They publish findings, work with patients about priorities (for example pain management), and develop biomarkers and outcome measures for future therapies. Participation can involve clinic visits at a consortium site, remote surveys, and sample donation depending on the specific protocol.
Who could benefit from this research
Good fit: People diagnosed with osteogenesis imperfecta or other rare brittle bone disorders, especially those with known or suspected genetic causes, are the intended participants.
Not a fit: People without brittle bone conditions or those who do not have a confirmed diagnosis or are unable to attend consortium clinic sites are unlikely to benefit directly from participation.
Why it matters
Potential benefit: Better understanding of how specific genetic forms of brittle bone disorders affect health could lead to more precise care, clearer monitoring tools, and improved treatment options in the future.
How similar studies have performed: Earlier years of this consortium have enrolled participants and produced many publications on natural history and patient priorities, but important questions about mutation-specific outcomes and biomarkers remain.
Where this research is happening
Houston, United States
- Baylor College of Medicine — Houston, United States (Active)
Researchers
- Principal investigator: Lee, Brendan — Baylor College of Medicine
- Study coordinator: Lee, Brendan
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.