WELCOME TO
The IMPACT Survey
Uncovering the impact of osteogenesis imperfecta through the voices of those living with this rare condition
What is IMPACT?
The groundbreaking IMPACT Survey, the largest ever conducted in osteogenesis imperfecta (OI) is an international research project exploring the real impact OI has on people’s lives.
The IMPACT Survey is aimed at capturing and quantifying the true challenges of life with OI to enable better diagnosis, management and care, and to support availability of potential future treatments for OI.
Why IMPACT is important
In February 2023, the Orphanet Journal of Rare Diseases published “The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review.” The review captured and quantified the published evidence relating specifically to the clinical, humanistic, and economic impact of OI on individuals, their families, and wider society.
The review found that few records included the current care practice, diagnosis and monitoring, interactions with the healthcare system, or transitions of care across life stages. The review identified there was limited data on the wider health concerns of OI beyond bone health and how these concerns may impact quality of life, in particular that of adult men and other family members.
These types of data are important for making decisions about the availability of new treatments. The IMPACT Survey was designed to get bigger and better data to make sure the full impact of OI is quantified and understood.
Organizations behind the IMPACT Survey
The IMPACT Survey is a successful collaboration between OI organizations by the Osteogenesis Imperfecta Foundation, the umbrella organisation Osteogenesis Imperfecta Federation Europe and its members, and the pharmaceutical company Mereo BioPharma.
Thank you to the OI Community
The IMPACT Survey and resulting data would not have been possible without the osteogenesis imperfecta community.
Their willingness to take part in the survey has allowed for the creation of a valuable data source which will provide important and meaningful insights into the impact of OI for years to come.
What you can find on the IMPACT Survey website
Learn more about the IMPACT Survey.
Explore our menu of available data and submit a request form to access detailed insights about life with osteogenesis imperfecta.
Gain valuable insights into how osteogenesis imperfecta affects quality of life, financial well-being, and clinical journeys through the latest publications, posters and presentations from the IMPACT Survey.
Access resources for social media to spread awareness and support for those impacted by OI.
