There are several genetic instruments available to measure the impact of Gaucher Disease (GD) on a patients quality of life, but no specific measure by which patients can report this information themselves. Speaking from the 23rd Congress of the European Hematology Association (EHA) 2018, held in Stockholm, Sweden, Esther Oliva, MD, of the Grande Ospedale Metropolitano Bianchi Melacrino Morelli, Reggio Calabria, Italy, discusses her project to design such an instrument in order to help clinicians gain a more in-depth understanding of the impact of GD on patients and inform their treatment plan.
Developing a patient-reported outcome instrument for Gaucher disease
