Baylor College of Medicine was selected by the National Institutes of Health (National Institute of Arthritis and Musculoskeletal and Skin Disease, National Institute of Dental and Craniofacial Research, National Center for Advancing Translational Sciences, and National Institute of Child Health and Human Development) to lead the Brittle Bone Disorders Rare Disease Clinical Research Consortium, a multi–center initiative that focuses on understanding and providing better treatment options for rare diseases characterized by bone fragility and fractures.
The consortium is partnering with the Osteogenesis Imperfecta Foundation, based in Gaithersburg, Maryland, to train a broad spectrum of health care providers in the diagnosis and treatment of osteogenesis imperfecta (OI). The Osteogenesis Imperfecta Foundation is the only voluntary national health organization dedicated to helping people cope with the problems associated with OI.
The consortium has three primary goals. One is to gain a better understanding of all genetic forms of OI. The second is to expand treatment options. Based on recent research Dr. Brendan Lee published in the journal Nature Medicine regarding a new approach to treatment for OI, the consortium will initiate a Phase I clinical trial. Additionally the consortium plans to initiate other pilot studies focused on developing measures of quality of care and identification of new biomarkers. The third goal is to implement training programs for the next generation of physicians and scientists in the area of genetic bone disease.