Osteogenesis Imperfecta (OI) Quality of Life Survey Pilot Project 2
NCT ID: NCT02793063
Last Updated: 2018-03-06
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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COMPLETED
300 participants
OBSERVATIONAL
2016-06-30
2016-08-10
Brief Summary
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Detailed Description
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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.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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BBD Consortium Contact Registrants
Osteogenesis Imperfecta patients who have self-registered at the Brittle Bone Disorders Consortium (BBD) Consortium Contact Registry, a web-based contact registry developed and supported by the Data Management and Coordinating Center (DMCC) for the Rare Diseases Clinical Research Consortium (RDCRN), located at the University of South Florida.
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.
Interventions
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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.
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
2 Years
ALL
No
Sponsors
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Rare Diseases Clinical Research Network
NETWORK
National Institutes of Health (NIH)
NIH
University of South Florida
OTHER
Responsible Party
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Principal Investigators
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Jeffrey Krischer, Ph.D.
Role: PRINCIPAL_INVESTIGATOR
University of South Florida
Laura Tosi, M.D.
Role: PRINCIPAL_INVESTIGATOR
Children's National Research Institute
Jeffrey Krischer, Ph.D.
Role: STUDY_CHAIR
University of South Florida
Laura Tois, M.D.
Role: STUDY_CHAIR
Children's National Research Institute
Locations
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University of South Florida, Health Informatics Institute
Tampa, Florida, United States
Countries
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References
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Richesson RL, Young K, Lloyd J, Adams T, Guillette H, Malloy J, Krischer JP. An automated communication system in a Contact Registry for persons with rare diseases: tools for retaining potential clinical research participants. AMIA Annu Symp Proc. 2007 Oct 11:1094.
Richesson RL, Lee HS, Cuthbertson D, Lloyd J, Young K, Krischer JP. An automated communication system in a contact registry for persons with rare diseases: scalable tools for identifying and recruiting clinical research participants. Contemp Clin Trials. 2009 Jan;30(1):55-62. doi: 10.1016/j.cct.2008.09.002. Epub 2008 Sep 7.
Other Identifiers
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BBD7702
Identifier Type: -
Identifier Source: org_study_id
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