BBD Longitudinal Study of Osteogenesis Imperfecta (NCT02432625)
Rare Diseases Clinical Research Network Brittle Bone Disease Consortium Longitudinal Study of Osteogenesis Imperfecta
🩺 Plain-English Summary (8th-Grade Level)
Osteogenesis Imperfecta (OI) is a rare disorder of increased bone fragility characterized by fractures with minimal or absent trauma, dentinogenesis imperfecta (DI), and, in adult years, hearing loss. It is seen in both genders and all races. The clinical features of OI represent a continuum varying from perinatal lethality to individuals with severe skeletal deformities, mobility impairments, and very short stature to nearly asymptomatic individuals with a mild predisposition to fractures, normal stature, and normal lifespan. Fractures can occur in any bone, but are most common in the extremities. These disorders can be devastating and progressive and result in deformity, chronic pain, impaired function and loss of quality of life. The overall goal of this study is to answer specific question about the natural history of brittle bone diseases as defined by molecular etiology and to develop the foundation for prospective clinical studies.
Who can join: Review the eligibility criteria below.
Location: Phoenix Children's Hospital — Phoenix, Arizona
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (12 Sites)
- Phoenix Children's Hospital — Phoenix, Arizona
- University of California Los Angeles — Los Angeles, California
- AI Dupont Hospital for Children — Wilmington, Delaware
- Children's National Medical Center — Washington D.C., District of Columbia
- University of South Florida — Tampa, Florida
- Kennedy Krieger Institute / Hugo W. Moser Research Institute — Baltimore, Maryland
- University of Nebraska Medical Center — Omaha, Nebraska
- Hospital for Special Surgery — New York, New York
- Oregon Health and Science University — Portland, Oregon
- Baylor College of Medicine — Houston, Texas
- Shriners Hospital for Children, Chicago / Marquette University — Milwaukee, Wisconsin
- Shriners Hospital for Children — Montreal, Quebec
📞 Contact the Study Coordinator
Phone: (713) 798-6694
Email: diannen@bcm.edu
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Osteogenesis Imperfecta
- Dental Malocclusion and Craniofacial Development in OI — Los Angeles, California
- Setrusumab vs Placebo for Osteogenesis Imperfecta — Little Rock, Arkansas
- Cardiopulmonary Outcomes in Osteogenesis Imperfecta: BBD7708 — Los Angeles, California
- Clear Aligners for the Treatment of Dental Malocclusion in OI — Los Angeles, California
- Study to Evaluate Efficacy and Safety of Romosozumab Compared With Bisphosphonates in Children and Adolescents With Osteogenesis Imperfecta — Birmingham, Alabama
- Setrusumab vs Bisphosphonates in Pediatric Subjects With Osteogenesis Imperfecta — Phoenix, Arizona
Explore by condition: All Osteogenesis Imperfecta clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.