During this session, Dr. Eric Storch of Baylor College of Medicine provided an overview of the OI Wellbeing Study—a multi-phase research initiative examining the experiences and mental health of individuals with osteogenesis imperfecta (OI). He highlighted key findings from Phase I qualitative interviews with caregivers, adults and children with OI, and clinicians, covering topics such as pain management and pediatric mental health. Dr. Storch also presented updates on the longitudinal data collection on health outcomes across different age groups at nine participating sites and shared emerging insights from the Phase III quantitative study on adult psychosocial well-being. Watch the recording of this session below!

This research is part of the Brittle Bone Disorders Consortium (BBDC), a multi-center program that focuses on understanding and providing better treatment options for all types of osteogenesis imperfecta. More information on the BBDC can be found here: https://bbd.rarediseasesnetwork.org/.