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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
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The patient clinical journey and socioeconomic impact of osteogenesis imperfecta a systematic scoping review
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The IMPACT Survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and their caregivers
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The IMPACT Survey: the economic impact of osteogenesis imperfecta in adults
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The IMPACT Survey: the humanistic impact of osteogenesis imperfecta in adults
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The IMPACT Survey: The Economic Impact of Caring for an Individual with Osteogenesis Imperfecta
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The IMPACT Survey: The Humanistic Impact of Caring for an Individual with Osteogenesis Imperfecta
Abstracts
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IMPACT Survey: Funding sources, Nov 2023
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IMPACT Survey: Access challenges, Nov 2023
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IMPACT Survey: Productivity losses, Nov 2023
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IMPACT Survey: Prevalence and impact of signs, symptoms, and events, Nov 2023
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IMPACT Survey: Overview, April 2023
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IMPACT Survey: Healthcare experiences, May 2025
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IMPACT Survey: Comparing the humanistic and economic impact to caregivers, Nov 2024
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Etude IMPACT: caractéristiques des patients français atteints d'ostéogenèse imparfaite, Dec 2024
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IMPACT Survey in Spain: characteristics of pain in children, Nov 2024
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Encuesta IMPACT en españa: Las pruebas genéticas y las experiencias de diagnóstico de las personas con osteogénesis imperfecta, May 2025
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The IMPACT Survey in Spain: clinical status of people with osteogenesis imperfecta, Oct 2024
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Indagine IMPACT in Italia: le interazionicon i servizi sanitari dei soggetti con osteogenesi imperfetta, Dec 2024
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IMPACT Survey: Early findings from Italy, Dec 2023
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Die IMPACT-Umfrage in Deutschland: Nutzung des Gesundheitswesens von Menschen mit Osteogenesis imperfecta
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IMPACT Survey: Genetic Testing and Diagnostic Experiences of People with Osteogenesis Imperfecta, Sep 2025
Posters
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A global perspective on self-reported productivity losses associated with osteogenesis imperfecta
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Management of osteogenesis imperfecta (OI): self- reported funding sources for healthcare, consumables and services across the EU5 and Nordics
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Management of osteogenesis imperfecta (OI): self- reported access challenges to consumables and services across the EU5 and Nordics
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Encuesta IMPACT en España: situación clínica de la población con osteogénesis imperfecta
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Encuesta IMPACT en España: las características del dolor en niños con osteogénesis imperfecta
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The IMPACT Survey: healthcare experiences reported by individuals with osteogenesis imperfecta and their caregivers
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Comparing the humanistic and economic impact of osteogenesis imperfecta affected and non-affected caregivers, who care for an individual with osteogenesis imperfecta
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Encuesta IMPACT en España: experiencia en pruebas genéticas y diagnóstico de personas con osteogénesis imperfecta
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The IMPACT Survey in Italy: healthcare interactions of people with osteogenesis imperfecta
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Die IMPACT-Umfrage bietet einzigartige Einblicke in die selbstberichteten Erfahrungen von Jugendlichen mit Osteogenesis imperfecta (OI) anhand eines neuen Datensatzes mit 92 Teilnehmern
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Etude IMPACT : caractéristiques des patients français atteints d'ostéogenèse imparfaite
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Die IMPACT-Umfrage in Deutschland: Nutzung des Gesundheitswesens von Menschen mit Osteogenesis imperfecta
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Bone fragility and beyond: prevalence and impact of clinical signs, symptoms and events in children with osteogenesis imperfecta
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The IMPACT Survey: Genetic Testing and Diagnostic Experiences of People with Osteogenesis Imperfecta
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The IMPACT Survey in the UK: genetic testing and diagnosis experience of people with osteogenesis imperfecta
Presentations
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IMPACT Survey: Prevalence and impact of signs, symptoms, and events, Jan 2024
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IMPACT Survey: Scoping and survey overview, June 2023
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IMPACT Survey: Pain experience in adults with OI, June 2023
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IMPACT Survey: Early findings from Italy, Dec 2023
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IMPACT Survey: Prevalence and impact of signs, symptoms, and events in children, Oct 2024
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Die IMPACT-Umfrage bietet einzigartige Einblicke in die selbstberichteten Erfahrungen von Jugendlichen, Sep 2024
Infographics
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IMPACT Survey - Demographic data
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IMPACT Survey - Method and first findings
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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.
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Humanistic impact
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OI patient healthcare journey
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Caregiver impact
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Clinical impact