Currently there is a lack of evidence-based guidelines for OI to base good clinical practice on. Providing a view what “good clinical practice for OI” should look like based on evidence and expert opinion is expected to make a significant impact on Quality of Life for people with OI anywhere in the world. The project is part of the work program of the European Reference Network BOND and extends the scope to include professionals from around the globe.
The team involved in this project consists of about 30 of the best medical specialists worldwide focusing on children and adults with OI across all main disciplines. People with OI will be able to advise/comment and participate in various stages of the project. If you are interested in this project, please contact dagmar.mekking@care4brittlebones.org
The project is led by dr. Eva Åström, MD, PhD, Karolinska Institutet and University Hospital, Stockholm, Sweden and prof. Lars Sävendahl, MD, PhD, Karolinska Institutet and University Hospital, Stockholm, Sweden.