HOW TO USE
Available Data
How you can use the data
Explore an overview of available data collected within the IMPACT Survey that offer a comprehensive view of how OI impacts individuals’ lives.
Our data repository houses a wealth of information on quality of life, financial implications, clinical experiences, and more related to the lived experience of people with osteogenesis imperfecta. Whether you’re a healthcare professional, researcher, or advocate within the OI community, our data is designed to deepen your understanding and inform your work.
If you are interested in accessing IMPACT data for a specific project or programme, please complete the data request form and a representative of the Data Management Committee will be in touch to discuss what is possible.
Requests will be considered by the Data Management Committee on an individual basis for their value to the OI community. Only specific requests will be considered, a full transfer of the IMPACT dataset will not be considered.
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- Country/Geographic region
- Age
- Sex
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- Height
- Mobility status
- OI severity
- OI type
- Incorrect diagnosis
- Time to diagnosis
- Age of diagnosis
- Genetic diagnosis
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- Clinical signs, symptoms, and events experienced in past 12 months
- Clinical signs, symptoms, and events experienced prior to past 12 months
- Impact of clinical signs, symptoms, and events in past 12 months
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- Pain medication use
- Medication type
- Bisphosphonates
- Surgery
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- Quality of care
- Treatment experience post-COVID
- Avoidance of healthcare
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- Negative impact of OI
- Positive impact of OI
- Worries and concerns
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- Living arrangement
- Employment status
- Missed workdays
- Caregiver relationship to care recipient
- Education status
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- OI consumables and services
- Private healthcare
- Healthcare costs coverage
- Out-of-pocket spending
- Access challenges
- Healthcare resource use