Goals, Mission & Vision h1 >
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.