We have developed an innovative approach to help communities in managing a data gathering process that generates new evidence for studies on rare diseases.
Through the direct participation of patients we enable the aggregation of medical research data with those generated by patients, for a better understanding of the disease.
We facilitate the aggregation, management and financing of groups of patients and researchers. Gathering data directly from the community we help sharing knowledge.
Cloud-computing, state-of-the-art technologies and a complete view of the process are the enabling factors for security, collaboration and for the generation of quality data.
We generate longitudinal data, until now unavailable, for studying the natural history of rare diseases and managing the long-term follow-up on as many patients as possible.