The Company

The Miogen Laboratory of the Department of Life Sciences of the University of Modena and Reggio Emilia deals with the management of the facio-scapulo-humeral muscular dystrophy register (FSHD) containing the data of 6600 subjects


The Challenge

Facial Scapulo Omeral Dystrophy (FSHD) is a rare disease that presents extreme variability in the manifestation of symptoms and progression times. To obtain reliable and useful data for research, a detailed and constant analysis of the clinical and genetic information of the subjects is necessary. The challenge of researchers is to integrate and understand the data collected to identify new diagnostic and prognostic factors.


The solution

The new Italian FSHD Registry developed by DataRiver is based on the integration of the Electronic Data Capture OpenClinica platform and the MOMIS Dashboard system for research, analysis and data extraction. Using the techniques of Big Data Analysis and Data Integration, MOMIS has allowed to reorganize data from decades of research, distributed on heterogeneous sources and different format. All the sources have been integrated and made available to researchers on a simple and intuitive web platform, able to visualize the data in the most suitable graphic form to explore new possible correlations and directions for the research.

The Registry has allowed to integrate laboratory data and clinical data of the Italian Faccio Scapolo Omerale Destruction Registry (FSHD) that was contained on two heterogeneous data sources.



– optimization of research and analysis of existing data
– integration of heterogeneous and distributed sources
– possibility to identify and visualize new KPIs necessary to deepen the knowledge of the disease
– possibility of identifying new genetic and environmental factors useful for diagnostics and prognosis