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Menopause & OI Survey: Share Your Experience (Women 35+)
We’re inviting women with osteogenesis imperfecta (OI), age 35 and older, to take part in a new survey focused on menopause and OI.
This project is part of the OIF Adult Health Initiative, an international group of OI clinicians and researchers that includes members of the OIF’s Medical Advisory Council. The survey was developed by this group to better understand how menopause may impact women with OI—including symptoms, bone health, daily life, and access to care.
While menopause is widely studied in the general population, there is very limited data specific to OI. Your input will help begin to fill that gap and guide future research, resources, and care recommendations.
Who should take this survey?
Women with OI who are 35 or older, living anywhere in the world.
A note about the questions:
This survey includes questions about personal health experiences that are important to understanding menopause in women with OI. We’re grateful for your time and willingness to share your experiences.
What to expect:
- Questions in English about menopause symptoms, bone health, and healthcare experiences
- Takes approximately 10 minutes to complete
- Survey will remain open for six weeks, through June 29, 2026
Why this matters:
Your responses will help us:
- Better understand the menopause experience in women with OI
- Identify gaps in care and support
- Inform future research and expert discussions, including a planned expert consensus meeting and potential publications
This is an important opportunity to bring real experiences into the research and clinical conversation—and help shape future guidance for women with OI.
Thank you for taking the time to contribute to this important work.