Interview Study - Get Involved

Interview Study Seeking Adults with Osteogenesis Imperfecta (OI)

(This part of the study is now complete - more information will follow)

If you are an adult with OI, you may be able to participate in an interview study. This study has two aims:

  1. To gain an understanding of what it’s like to have OI and how the condition impacts your quality of life
  2. To obtain feedback on a questionnaire that was designed for adults with OI

What will happen during the study?

First, you will be asked to complete a short questionnaire about yourself (with questions such as your age, gender and when you were diagnosed with OI). Next you will take part in a 90 minute interview. During the first part of the interview you will be asked questions about what it is like to have OI (such as the symptoms you experience) and how having OI affects your everyday life. During the second part of the interview you will be asked to complete a questionnaire (called the OIQoL-A) that aims to measure the symptoms, impacts and quality of life of adults who have OI. You will then be asked some questions about what you think of the OIQoL-A. We appreciate that 90 minutes is a long time and you will be given the opportunity to take a break approximately halfway through your interview. You may also let the interviewer know if you would like to take a break at any point. As this is an interview study, there is no medical treatment being provided. If you participate, you will be compensated for your time.

Who is conducting the study?

This study is being conducted by ICON, a health research organization. This study is sponsored by Mereo, a pharmaceutical company that makes medicines for people with rare diseases. No one outside of the ICON study team will have access to any personal information you may provide.

How do I take part?

Taking part in this study is entirely your choice. If you are least 18 years old, have been diagnosed with OI, and are interested in learning more about this study please email OIstudy@iconplc.com or call 01865 324930 to be directed to the study teamThe study team will tell you more about the study and find out if you are eligible to participate. There are a limited number of places on this study, so please contact us as soon as possible if you would like to take part!