Osteogenesis Imperfecta (OI) Quality of Life Survey Pilot Project 2
| Status: | Completed |
|---|---|
| Conditions: | Orthopedic |
| Therapuetic Areas: | Orthopedics / Podiatry |
| Healthy: | No |
| Age Range: | 2 - Any |
| Updated: | 4/17/2018 |
| Start Date: | June 2016 |
| End Date: | August 10, 2016 |
Rare Diseases Clinical Research Network Brittle Bone Disorders Consortium Osteogenesis Imperfecta (OI) Quality of Life Survey Pilot Project 2
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.
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.
Participants will be recruited through the RDCRN BBD Contact Registry. An email invitation
will be sent to all RDCRN BBD Contact Registry participants that meet the inclusion criteria
to complete the online PROMIS CAT instruments. The email invitation will contain a link to
the informed consent form. Once participants have consented to the study, they will have
access to the online instruments. Follow-up emails will be sent to participants that have not
completed any of the instruments. Reminder emails will be sent to participants with partially
completed instruments.
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.
will be sent to all RDCRN BBD Contact Registry participants that meet the inclusion criteria
to complete the online PROMIS CAT instruments. The email invitation will contain a link to
the informed consent form. Once participants have consented to the study, they will have
access to the online instruments. Follow-up emails will be sent to participants that have not
completed any of the instruments. Reminder emails will be sent to participants with partially
completed instruments.
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.
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
We found this trial at
1
site
Tampa, Florida 33612
Principal Investigator: Jeffrey Krisher, Ph.D.
Phone: 813-396-9296
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