First article from IMPACT Survey published

The IMPACT Survey is an international research project exploring the real impact OI has on people’s lives.

On March 21st the first article based on results from the IMPACT Survey was published in Orphanet Journal: “The IMPACT survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and their caregivers”

In the IMPACT survey, we found that, irrespective of age, individuals with OI experience numerous and evolving symptoms that affect their quality of life; however, pain and fatigue are consistently present.

The article also includes an important discussion on how to categorize OI (mild, moderate, severe, clinical type, genetic type, height, mobility, …)


“While in this survey sample self-reported OI severity correlated well with other characteristics like height, mobility and clinical OI type, OI types were split across multiple OI severities. This finding mirrors previous research and suggests that “severity” is a holistic, patient-centric view of individuals’ health, that is not entirely captured by the clinical OI type which is determined based on clinical and molecular patient characteristics.”

impact survey graphic

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