Value of the Rare Disease Registry of the Italian Region Friuli Venezia Giulia

The lack of epidemiological and clinical data is a major obstacle in health service planning for rare diseases. Patient registries are examples of real-world data that may fill the information gap.

Source: Value in Health - May 23, 2019 Category: International Medicine & Public Health Authors: Francesca Valent, Laura Deroma, Alessandro Moro, Giovanni Ciana, Paolo Martina, Fabio De Martin, Elisa Michelesio, Maria Rosalia Da Riol, Daniela Macor, Bruno Bembi, the Rare Disease Network of the Friuli Venezia Giulia Region Source Type: research