Social Economic Burden and Health-Related Quality of Life of Patients with Scleroderma in Europe (BURQOL-RD)
BURQOL-RD Project is a 3-year-project that addresses crucial questions for the rare diseases community. It goes beyond any previously implemented surveys by also considering the ‘overall cost’ (direct and indirect) of caregivers, who dedicate their time and energy to look after patients. In this way, BURQOL-RD will generate a complex and reliable estimate of the social economic burden and health-related quality of life of patients with rare diseases and their caregivers in Europe. Scleroderma is among the set of ten rare diseases that are investigated by BURQOL-RD study. More information here.