The FSHD Italian Registry has been developed for UNIMORE Miogen Lab as an open framework based on the open source EDC platform OpenClinica™ and the MOMIS Dashboard system for data search, analysis, and extraction to enable collaboration and information exchange for biomedical and clinical research.

Bio-bank databases and software are heterogeneous and not standardized: a complete information of a biological sample is fragmented through several disconnected data sources.

The platform provides a tool to take advantage of electronic data capture compliant with international regulatory guidelines and of a flexible, responsive tool to get real time insights of data, displayed in dynamic charts, tables and maps. It is possible to integrate other distributed sources to discover new information, using proper Big Data Analysis techniques to deal with complex analysis and to increase the information related to a single sample, also linking genomic and radiological investigations.


Main system features are:

  • Strict compliance with the confidentiality and security constraints on highly sensitive data
  • Clinical data capture managed in accordance with NIH, HIPAA, 21 CFR Part 11 requirements and other international regulatory guidelines
  • Integration with Bio-bank databases and other registry databases to increase information and knowledge about diseases and patients
  • Access to the information available in different databases without requiring the migration of all data to a single system
  • Integration with solutions for Patient Engagement and data capture from mobile and wearable devices to empower patients through self-assessment of health indicators
  • Real time collection of physiological data and Patient Reported Outcomes (ePRO) trough wearable and clinical devices


    07/09/2017 DataRiver at the 3rd RTSI International forum

    DataRiver will attend the third Research and Technologies for Society and Industry (RTSI) International Forum, held between the 11th to the 13th of September 2017 at the Enzo Ferrari