DELVE INTO THE RESEARCH

IMPACT Survey publications

Immerse yourself in a wealth of knowledge from the largest global survey on the impact of OI on quality of life with our collection of publications, posters, and presentations highlighting data from the IMPACT Survey.

Explore the latest research findings, insights, and analyses that shed light on the lived experience of OI.

Publications

  • The patient clinical journey and socioeconomic impact of osteogenesis imperfecta a systematic scoping review

  • The IMPACT Survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and their caregivers

  • The IMPACT Survey: the economic impact of osteogenesis imperfecta in adults

Abstracts

  • IMPACT Survey: Funding sources, Nov 2023

  • IMPACT Survey: Access challenges, Nov 2023

  • IMPACT Survey: Productivity losses, Nov 2023

  • IMPACT Survey: Prevalence and impact of signs, symptoms, and events, Nov 2023

  • IMPACT Survey: Overview, April 2023

Posters

  • A global perspective on self-reported productivity losses associated with osteogenesis imperfecta

  • Management of osteogenesis imperfecta (OI): self- reported funding sources for healthcare, consumables and services across the EU5 and Nordics

  • Management of osteogenesis imperfecta (OI): self- reported access challenges to consumables and services across the EU5 and Nordics

Presentations

  • IMPACT Survey: Prevalence and impact of signs, symptoms, and events, Jan 2024

  • IMPACT Survey: Scoping and survey overview, June 2023

  • IMPACT Survey: Pain experience in adults with OI, June 2023

Infographics

  • IMPACT Survey - Demographic data

  • IMPACT Survey - Method and first findings

  • IMPACT Survey - Economic impact

Upcoming publications and research

Stay informed on publications from IMPACT that are helping to quantify the impact of living with OI and look forward to upcoming publications that take a closer look at life with Osteogenesis Imperfecta.

We regularly update this page with new data, so please revisit to see what is new. Planned topics will examine the economic impact and humanistic impact of OI, as well as taking a closer look at the healthcare journey of people with OI, the effects on caregivers to those with OI, and clinical impact of the condition.

  • Humanistic impact

  • OI patient healthcare journey

  • Caregiver impact

  • Clinical impact