Understanding Psychosocial needs of individuals with Osteogenesis Imperfecta across the Lifespan

Status: Recruiting

Study Summary

For Diseases:

  • Osteogenesis Imperfecta

 

About this Study

The purpose of this study is to better understand the mental health and pain experiences of people living with Osteogenesis Imperfecta (OI). Study investigators will conduct virtual interviews and administer self-report questionnaires to individuals living with OI (ages 8-89), as well as caregivers and clinicians who treat people with OI. For completion of the hour-long virtual interview and questionnaire, participants will be compensated $50.

The study aims to recruit 50 participants, though larger studies will follow

Inclusion criteria:

  • OI diagnosis (or clinician or caregiver of individual with OI)
  • Ages 8-89
  • USA Resident
  • Able to communicate in English

How to participate:

If you or your child are interested in participating in the study, please complete the interest survey.

Additional questions may be directed to OIWellbeing@bcm.edu or (713) 798-8563 for more information.



Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.