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

NCT02793063 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 300

Last updated 2018-03-06

No results posted yet for this study

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.

Conditions

Interventions

OTHER

Web-based Survey

This study will occur online. Participants will be asked to complete multiple surveys one time. Participants may receive study reminder emails to complete surveys. Participants will be able to complete the surveys all at once or in multiple sessions. Participants will have approximately 3 months to complete the surveys after consenting.

Sponsors & Collaborators

  • Rare Diseases Clinical Research Network

    collaborator NETWORK

  • National Institutes of Health (NIH)

    collaborator NIH

  • University of South Florida

    lead OTHER

Principal Investigators

  • Jeffrey Krischer, Ph.D. · University of South Florida

  • Laura Tosi, M.D. · Children's National Research Institute

  • Jeffrey Krischer, Ph.D. · University of South Florida

  • Laura Tois, M.D. · Children's National Research Institute

Eligibility

Min Age
2 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2016-06-30
Primary Completion
2016-08-10
Completion
2016-08-10

Countries

  • United States

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02793063 on ClinicalTrials.gov