At a glance
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Pregnancy in Osteogenesis Imperfecta (OI) Registry
In Brief
An observational study evaluating Web-based Survey for Osteogenesis Imperfecta and Brittle Bone Disorders. Completed, enrolled 170 participants across 1 site.
Detailed Summary
The purpose of this study is to learn about pregnancy outcomes in osteogenesis imperfecta (OI). Patients enrolled in the Brittle Bone Disorders (BBD) Contact Registry (CR) will be invited via email to participate in this study.
Study Details
Timeline
Interventions
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.