CompletedNot Applicable

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

United States300 participantsStarted 2016-06

Plain-language summary

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.

Who can participate

Age range2 Years

SexALL

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Inclusion Criteria: * Enrollment in the RDCRN BBD Contact Registry English speaking Age 2 to adult Exclusion Criteria: * Inability to provide informed consent Inability to complete instruments

What they're measuring

Validated Computer Adaptive Testing (CAT) PROMIS instruments

Timeframe: 3 months

Trial details

NCT IDNCT02793063

SponsorUniversity of South Florida

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2016-08-10

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