Many people & projects are talking about patient outcomes & outcome measures these days. Today at the #iccbh2019 there was a poster presentation from Australia which reported that 1782 different outcome measures were used in 19 different trials about OI. This big variety makes it challenging to compare research across borders and between projects.
We need standards & guidelines. Come to Amsterdam in November and help us develop some recommendations on this! Dr. Frank Rauch (photo) is the programme chair of the Quality of Life 4 OI-conference and will be there together with many others experts in the field, like Antonella Forlino (photo).
Register at: www.qualityoflife4oi.org