Osteogenesis Imperfecta Clinical Trial
Official title:
Rare Diseases Clinical Research Network Brittle Bone Disorders Consortium Osteogenesis Imperfecta (OI) Quality of Life Survey Pilot Project 2
The purpose of this study is to explore the patient perspective of disease burden in Osteogenesis Imperfecta (OI). Participants will complete a web-based survey of questions which are usually administered within the Patient-Reported Outcome Measurement Information System (PROMIS) and provide feedback regarding the appropriateness of the questions for someone with OI.
Participants will be recruited through the RDCRN BBD Contact Registry. An email invitation
will be sent to all RDCRN BBD Contact Registry participants that meet the inclusion criteria
to complete the online PROMIS CAT instruments. The email invitation will contain a link to
the informed consent form. Once participants have consented to the study, they will have
access to the online instruments. Follow-up emails will be sent to participants that have not
completed any of the instruments. Reminder emails will be sent to participants with partially
completed instruments.
Data will be collected and stored by the RDCRN DMCC at USF.
Data from patients co-enrolled in the "Longitudinal Study of Osteogenesis Imperfecta" and the
BBD RDCRN Contact Registry will be linked and compared. Additional disease specific
information will be collected by the survey (e.g., information on OI type and diagnosis,
height, number of fractures, concurrent medication use, utilization of any mobility aid,
hearing aid, or other device that they may use.
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