OSTEOGENESIS IMPERFECTA

This study follows children and teens with osteogenesis imperfecta (brittle bone disease) who previously received romosozumab in an earlier trial. Researchers will monitor 71 participants for side effects over time. The goal is to see if the drug is safe for long-term use in this…

This study tests whether bisphosphonates, drugs commonly used to strengthen bones, can also treat hearing loss in people with Osteogenesis Imperfecta (OI) type I. Researchers will enroll 100 adults and children with OI, giving some the drug and comparing their hearing over time. …

This study tests whether a 6-month adapted physical activity program can improve endurance and quality of life in 30 children and teenagers with osteogenesis imperfecta (brittle bone disease). Participants will do supervised exercises designed for their condition. The main goal i…

This study is creating a large database of genetic and physical information from 3100 children with craniofacial abnormalities, such as craniosynostosis and Pierre Robin sequence. Researchers will analyze this data to understand why these conditions vary so much from person to pe…

This study tests a new, radiation-free ultrasound technology called REMS to measure bone density in children aged 5 to 18 who have conditions that weaken bones, such as brittle bone disease or osteoporosis. The goal is to see if REMS can work as well as the standard X-ray method …

This study is observing 40 people with osteogenesis imperfecta (brittle bone disease) to see how often heart problems occur. Researchers will use standard heart tests like echocardiograms to check for issues. The goal is to create better screening guidelines to catch heart proble…

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 track how the disease progresses over time and how different genetic changes affect symptoms. No new treatments are …

This study looks at whether children and young adults (ages 12-20) with osteogenesis imperfecta, also known as brittle bone disease, have problems with their hearing and balance. Participants will undergo hearing tests and special balance assessments, and some may get CT or MRI s…