Osteogenesis Imperfecta (OI) Quality of Life Survey

Status: Closed to accrual

The purpose of this study is to identify questions about the quality of life for people with Osteogenesis Imperfecta (OI). Quality of life is defined as an individual’s opinion of the quality of his or her daily life and includes emotional, social, physical environment and health related dimensions. It is important to see if the standard questions asking about quality of life are appropriate for people with OI or if a new set of questions should be created for the OI community.

For Diseases:

  • Osteogenesis Imperfecta

Background

The Rare Diseases Clinical Research Network (RDCRN) Brittle Bone Disorders (BBD) Consortium Contact Registry is a vehicle through which patients (and their families) can register with the RDCRN to receive information about the activities of the BBD Consortium and learn about new studies in which they might be interested in participating. The RDCRN has developed surveys to be sent to the Contact Registry registrants to learn more about disease outcomes (patient reported outcomes) and collect more detailed diagnostic data.

About this Study

Individuals with OI will be recruited via the BBD Contact Registry. The BBD Contact Registry consists of over 900 participants with OI.

Participants enrolled in the BBD Contact Registry will receive an email inviting them to participate in the study. Interested participants will be directed to the informed consent document. After agreeing to participate, participants will be directed to the study web portal. The study web portal will be developed and maintained by the Data Management and Coordinating Center at the University of South Florida (USF).

Participants will complete a series of short surveys about their OI, including diagnosis, treatment information and quality of life.

Targeted Enrollment: 300

To be eligible to participate, you must be:

You are not eligible to participate if:

  • You cannot provide informed consent
  • You are unable to complete the study surveys

You can only join this study through a personalized link. This link has been sent to the email address you provided upon joining the BBD Contact Registry.

If you have any questions about this study, please contact:

Amoy Fraser, Study Project Manager
Address: University of South Florida
3650 Spectrum Blvd, Suite 100,
Tampa, Florida 33612-9446
Phone: 813-396-9462
Email: Amoy.Fraser@epi.USF.edu



Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.