The purpose of the Registry is to stimulate clinical research by bringing together investigators and potential research study participants.

The Registry does not, at this time, permit direct access by the investigator to the database or to study subjects. However, the investigator is asked to electronically forward his/her research protocol, after IRB approval by the investigator's institution, to the Registry Manager.

The OI Registry Advisory Committee will review the protocol. Protocols will be considered in terms of relevance to OI and scientific merit.

When approved, information about the protocol, including the consent form, will be forwarded to the cohort the investigator wishes to access. It is the responsibility of the individual OI person to contact the investigators if he/she wishes more information from the investigator or if the person wished to participate. If the OI person does not wish to participate, no contact or follow up will occur. Thus, it is the responsibility of the investigator to send to the Registry, material that will assist the potential study subject in making their decision.

Email the Registry Manager   2006 Kennedy Krieger Institute   Privacy Policy
Referral Information: For more information or to make an appointment at the Osteogenesis Imperfecta Clinic at Kennedy Krieger Institute, call toll free at 1-888-554-2080 or locally at 443-923-9400. Individuals with other questions or who are not able to access the OI Registry on-line are asked to call the Registry Office at 443-923-9180 for assistance.