Research is an important and growing area within Children’s OI Clinic. We are dedicated to finding the latest and best treatment available for pediatric patients. You may be asked to participate in research studies from time to time. Our research team that will obtain extra consents to aid in this process.
Children's OI Clinic is part of The Brittle Bone Disorders Consortium, part of the National Institute of Health's Rare Diseases Clinical Research Network. The consortium is a multi-centered program that focuses on understanding and providing better treatment options for all types of OI.
In addition to our work with the Brittle Bone Disorders Consortium, the Metabolic Bone & Osteogenesis Imperfecta Clinic at Children's is part of the Metabolic Bone Data Registry study. We collect data on all growing rod surgeries, current medical therapy for patients with OI (pamidronate or other bisphosphonate therapies), quality of life surveys, physical functioning surveys and more. Patients can be enrolled from birth to age 18 for this study.
While a cure is not imminent, OI research being conducted at our clinic will have a more immediate impact upon treatment protocols for the disorder.