ABOUT

Aims of IMPACT

The IMPACT Survey is a joint initiative between the Osteogenesis Imperfecta Foundation (OIF), the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE) and its members, and Mereo BioPharma, exploring the real impact OI has on people’s lives.

The IMPACT Survey aimed to capture and quantify the true challenges of life with OI to enable better diagnosis, treatment and care, and to support availability of potential future treatments of OI.

Survey description

The IMPACT Survey is the largest survey of its kind. With over 2000 unique responses, representing 2,988 individuals from 66 countries, the IMPACT Survey captures a comprehensive understanding of the impact of OI on people’s lives, their families, and the healthcare system.

The IMPACT Survey strives to empower the osteogenesis imperfecta community with valuable insights that can have an impact on the future of OI management and treatment.

Countries with over 50 respondents

The IMPACT survey employed rigorous standards to ensure accuracy and reliability. The survey was developed for the following primary target populations:

  • Adults with OI (over 17 years old)

  • Parents of children with OI – who don’t have OI themselves

  • Parents of children with OI who have OI themselves

  • Adolescents with OI (12 – 17 years old)

  • Close relatives of people with OI

Survey questions differed based on which target group respondents belonged to. Adults with OI who had children with OI could answer both on behalf of themselves and their children.

You can see the survey questions by visiting here.

How the data is managed

The data was gathered on a completely confidential and anonymous basis, with no personal identifiable information.

The IMPACT Survey is governed by a Steering Committee which was formed to oversee and direct the research, and includes representatives from the OI community, pediatric and adult physicians from both North America and Europe, and an experienced scientific Data Management Committee.

The patient organizations own the data

Following initial analyses and data cleaning, the anonymous dataset will be transferred to the ownership of the Data Management Committee, comprised of OIFE and OIF representatives, and Dr. Frank Rauch (data custodian).

In agreement with OIFE and OIF, data will also be shared with Mereo and its partners for continued analyses and publications. The Data Management Committee will independently decide how the data can be used in future.

How can I make an IMPACT?

There are various ways to support the IMPACT Survey and the OI community.

Sharing information about IMPACT on social media, websites, forums, and in your community can help amplify its reach. Find publications, posters, and presentations from the IMPACT Survey or head to our social media resources to find assets you can share online.

Every voice matters in shaping a better understanding of the lived experience of OI and enable better diagnosis, management and care, and to support availability of potential future treatments for OI.