Welcome to the IMPACT Survey

The IMPACT Survey explores the real impact osteogenesis imperfecta (OI) has on the daily lives of people with OI and those around them, and the costs and accessibility of treatment and support. Your answers will help us 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 for OI. OI associations can also use the data to lobby for OI services and the rights of the community.

Who is conducting the survey?

The IMPACT Survey is being conducted by the Osteogenesis Imperfecta Federation Europe (OIFE) and the Osteogenesis Imperfecta Foundation (OIF) and Mereo BioPharma with an international team of OI clinical experts from Europe and North America. Medical support and oversight are provided by Dr Frank Rauch from the Division of Orthopaedic Surgery at McGill University, Canada. The study is funded by Mereo BioPharma.

How will my personal information be protected?

The survey questions do not require you to provide your name or any other identifying information. All information collected will be treated confidentially, remain anonymised and be independently and safely stored by Wickenstones Ltd. according to the Data Protection Act 2018. Once the analysis is finished, the anonymous data will be transferred to a Data Management Committee, comprised of the OIFE and OIF, and Dr Frank Rauch.

Will I find out about the results of the survey?

Yes, the researchers plan to publish the results of the IMPACT Survey at a major international congress and in a medical journal. The results will also be presented on the OIFE and OIF webpages, via webinar, the OIFE magazine and in national OI community newsletters. You can also sign up to receive a link to the findings on the IMPACT Survey landing page. 

Thank you for taking the time to read through this information.


 
 
 

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