Osteogenesis Imperfecta Research

The Osteogenesis Imperfecta program conducts research within a variety of settings and OI populations.

  1. OI Clnic (Intramural) Research Projects: Research is conducted in-house utilizing information from the current patient population registered with the OI Clinic.
  2. OI Clnic (Extramural) Research Projects: Research is open to the OI population at large, and may or may not require site visits to the OI Clinic.
  3. Osteogenesis Imperfecta Registry: A data-based study developed to create an up-to-date listing of registered individuals with OI. This registry contains essential information about the history and condition of individuals with OI and is directed by each individual participant consenting to participate in this database. The information supplied by participants is kept strictly confidential and only shared with investigators doing approved research, and with the individual participant's consent to do so.

The sharing of information among individuals with OI and research scientists will help stimulate further research into OI and enhance progress toward a better understanding of -- and possible breakthroughs in -- medical treatment for individuals with OI.

To find out more about the registry or to get involved and participate in this study, visit the Osteogenesis Imperfecta Registry website.

To learn more about ongoing research projects within the OI program, visit the Osteogenesis Imperfecta Clinic website.

To learn more about OI research throughout the United States, visit the OI Foundation website.