Pregnancy in Osteogenesis Imperfecta (OI) Registry

Population: The RDCRN BBD Contact Registry helps researchers identify and recruit patients
who are eligible for participation in future research studies. People eligible for enrollment
in the RDCRN BBD Contact Registry include patients and parents of patients with Brittle Bone
Disorders. All patients with BBD from the United States and around the world are encouraged
to join.

Survey Administration: The investigators will administer a review of pregnancy outcomes
survey and delineate the outcomes in pregnancies complicated by varying forms of OI. 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.

Data: The survey data will be collected and stored at the Rare Diseases Clinical Research
Network's Data Management and Coordinating Center (DMCC) at the University of South Florida.
All data collected will be sent to the database of Genotypes and Phenotypes (dbGaP) to be
stored indefinitely.

Inclusion Criteria:

- Female with OI who has delivered an infant of at least 24 weeks' gestation

- Participant in the BBD Contact Registry

Exclusion Criteria:

- Inability to provide informed consent and complete survey

- Males

- Women with OI who have not delivered children and gestations associated with higher
order multiples