IMPACT is being conducted by the Osteogenesis Imperfecta Federation Europe (OIFE) and the Osteogenesis Imperfecta Foundation (OIF) with an international team of OI clinical experts from Europe and North America.
Medical support and oversight are provided by Professor Frank Rauch from the Division of Orthopaedic Surgery at McGill University, Canada. The study is funded by Mereo BioPharma.
It is an international research project aimed at capturing and quantifying the real impact OI has on the lives of people with OI and their families.
Results will be used to enable better healthcare services for both children and adults and to support availability of potential future treatments for OI.
The IMPACT Survey is for people with OI and parents/caregivers of children with OI. Launching end of June 2021 and running until the end of September 2021.
All information collected will be treated confidentially and remain anonymised. Survey data will be independently and safely stored by Wickenstones Ltd. according the Data Protection Act 2018.