OSTEOGENESIS IMPERFECTA

This study tests a drug called romosozumab against standard bone-strengthening medicines (bisphosphonates) in 106 children and teens with osteogenesis imperfecta, a condition that causes fragile bones and frequent fractures. The goal is to see if romosozumab reduces the number of…

This study follows children and teenagers with osteogenesis imperfecta (brittle bone disease) who previously received the drug romosozumab in an earlier trial. The goal is to monitor their long-term safety by tracking any side effects. No new treatment is given—just observation. …

This study tests whether a 6-month adapted physical activity program can improve exercise capacity in 30 children and teens with osteogenesis imperfecta (brittle bone disease). Participants will follow a safe, tailored exercise plan, and researchers will measure changes in endura…

This study looks at whether bisphosphonates, drugs used to strengthen bones, can help hearing loss in people with Osteogenesis Imperfecta (OI) type I. About 100 adults and children with OI will either receive the drug or be observed for up to 5 years. The goal is to see if the tr…

This study looks at whether a new ultrasound technology called REMS can safely measure bone density in children aged 5 to 18 who have conditions that weaken bones, like osteoporosis or growth hormone deficiency. Unlike the current standard (DXA), REMS uses no radiation. The goal …

This study is a registry that gathers medical, genetic, and quality-of-life information from people with osteogenesis imperfecta (brittle bone disease). It aims to better understand how the disease progresses and how genetics relate to symptoms. No treatments or interventions are…

This study looks at whether children and young adults (ages 12-20) with osteogenesis imperfecta (brittle bone disease) have problems with hearing and balance. Researchers will use hearing tests, balance tests, and scans to find links between the genetic type and severity of the d…

This study looks at heart structure and function in people with osteogenesis imperfecta (OI), a condition that makes bones fragile. Researchers want to learn how often heart problems occur in people with OI. About 40 participants will have heart tests. No treatment is given; the …