Osteogenesis imperfecta is a genetic disorder that affects the body's connective tissues and often leaves people with fragile or brittle bones. On Tuesday, Sept. 17, Evenings with Genetics, a monthly speaker series hosted by Baylor College of Medicine and Texas Children's Hospital, will highlight the current research and resources available to those living with osteogenesis imperfecta.
Dr. V. Reid Sutton, professor of molecular and human genetics at Baylor, will discuss the causes of osteogenesis imperfecta, the prognosis for those living with the disorder and the newest treatments being tested in clinical trials. Dr. Vinitha Shenava, assistant professor of orthopedic surgery at Baylor, will talk about the management of fractures and orthopedic treatment of bone deformity. A parent of a child with OI will join the panel as a guest speaker.
Currently, most individuals with osteogenesis imperfecta are treated with intravenous medications to increase their bone density and in some cases with orthopedic surgery. Baylor College of Medicine leads the Brittle Bone Disorders Rare Disease Clinical Research Consortium, a multi-center initiative funded by the National Institutes of Health, which aims to provide better treatment options for rare bone diseases. Sutton will discuss new information discovered as part of that research, including new therapies being tested in a phase I drug trial.
"One of the important things is that osteogenesis imperfecta can affect everyone differently. So it's important that treatment or management decisions be individualized to the person with osteogenesis imperfecta and what they're experiencing at that particular point in their life," Sutton said.
Evenings with Genetics offers the most current information on care and research advances for many genetic conditions. The seminars provide an opportunity for patients in the genetics community to meet other families experiencing similar situations.
