Pregnancy in Osteogenesis Imperfecta (OI) Registry

CompletedOBSERVATIONAL
Enrollment

170

Participants

Timeline

Start Date

June 16, 2017

Primary Completion Date

March 13, 2019

Study Completion Date

September 13, 2019

Conditions
Osteogenesis ImperfectaBrittle Bone Disorders
Interventions
OTHER

Web-based Survey

Patients will be sent an email invitation describing the study. If the participant wants to participate and is eligible, she will follow the survey link in the email message, which directs her to an IRB-approved online consent form. A unique survey link will be generated for each participant and included in the survey invitation, which is a customized email message. This link will allow the investigators to determine who completed the survey. The investigators will send repeat email invitations every two months (total of 3 invitations) to those invitees who have not yet participated. The investigators will allow approximately 6 months for enrollment and survey completion and expect that the study will close soon thereafter.

Trial Locations (1)

33612

RDCRN Data Management and Coordinating Center, University of South Florida, Tampa

All Listed Sponsors
collaborator

Rare Diseases Clinical Research Network

NETWORK

collaborator

National Institutes of Health (NIH)

NIH

lead

University of South Florida

OTHER

NCT03072303 - Pregnancy in Osteogenesis Imperfecta (OI) Registry | Biotech Hunter | Biotech Hunter