Baylor College of Medicine
Mark Green

Welcome To BBD

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.

The mission of the Brittle Bone Disorders Consortium is to conduct clinical research and clinical trials to learn more about the disease. We are a group of physicians, researchers, and educators focused on learning more about osteogenesis imperfecta and developing new and better treatments to improve the care of patients with osteogenesis imperfecta. We also seek to provide up-to-date information for patients to help them manage their diseases and to assist in connecting patients with support groups, expert doctors, and clinical research opportunities.

The goals of the Brittle Bone Disorders Consortium are:

  • Enroll a large group of patients with OI into an observational cohort study (where subjects are followed over time and clinical, laboratory and radiological data as well as blood samples specifically for research are collected at regular intervals).
  • Conduct clinical trials of promising new drugs for the treatment of OI.
  • Establish a patient contact registry.
  • Discover new laboratory markers of disease that will lead to better treatment and deeper scientific understanding of the causes of these diseases.
  • Develop improved methods for studying OI.
  • Work with OI patient support groups to help those patients who wish to be involved in research connect with those doctors conducting the research.
  • Train new, young investigators in the field of OI.
  • Construct and maintain an electronic website resource with significant information for clinicians, researchers, and patients.