For the last 1,5 years experts from many different countries have been working together in Project “Key4OI”. The aim of this project is to develop a core outcome set for OI, children and adults. The focus is on: Outcomes that are relevant for most people with OI, worldwide, througout a life time.
Outcomes that would support routine clinical practice and research and therefore a good health related Quality of Life for people with OI! Input was provided through 16 (!) OI focus group, usually supported by their local patient organisation as well as an expert. We are very thankful to Belgium (ZOI), Canada, Chili (FOICH), France (AOI), Germany (DOIG), HongKong/China (O1 local group supported by China Dolls Association), Italy (ASITOI), the Netherlands (VOI), Russia (Fragile People Fund), UK and USA (OIF) for their fantastic work!! The big question is: Was there sufficient agreement between the groups? Is is even possible to create a core outcome set for a disorder as divers as OI?
Soon this page will be completed with all relevant information regarding Key4OI