Osteogenesis Imperfecta (OI) Quality of Life Survey Pilot Project 2

Completed

Conditions studied: Osteogenesis Imperfecta, Brittle Bone Disorders

In brief

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.

Key facts

Study ID

NCT02793063

Run by

University of South Florida

People needed

300

Starts

2016-06-01

Expected to finish

2016-08-10

Last updated by the study team

2018-03-06

Who can join

Age: 2 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Enrollment in the RDCRN BBD Contact Registry English speaking Age 2 to adult

You may not qualify if…

• Inability to provide informed consent Inability to complete instruments

Where it is running

• University of South Florida, Health Informatics Institute — Tampa, Florida, United States

Full record on ClinicalTrials.gov

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