MONITORING DATA DURING AND AFTER PREGNANCY TO EARLY DETECT RARE DISEASES: THE EDERA PROJECT

Rare diseases (RDs) are an important public health problem and an ongoing challenge for the medical community and health policy. Because of the problems associated with access to care and information, people with RDs are very vulnerable at psychological/social/cultural level. Particular difficulties concern pregnant women affected with RDs or subjects with RDs that want to plan a pregnancy. In this context the project EDERA (Early DEtection of Rare diseAses) was designed and funded by the Agenzia Regionale per la Salute ed il Sociale (AReSS Puglia), and includes the collaboration of the group of Databases and Information Systems of the Department of Engineering for Innovation of the University of Salento with four Patient’s associations (HHT Onlus, CIDP Italia Onlus, APMAR Onlus and ANACC Onlus). The overall objective of the project is the knowledge in the field of maternal, fetal and child health, monitoring for the prevention, surveillance and early detection of RDs during and after pregnancy. Specifically, the project aims at creating a digital system for collecting data on maternal, fetal and child health by means of innovative techniques that exploit smartphones as a complementary, if not alternative, way to common methods for data collection. Patients will be able to easily provide data related to lifestyle (nutrition, physical activity, drugs, etc.), pregnancy (symptoms, treatments, moods, etc.), delivery (type, complications, etc.) and children features (weight, motor function, stimulus response, etc.). Data willbe shared respecting the rules of privacy and treatment of sensitive data, through accurate access management techniques. The approval of the project is a good starting result and shows the high interest of the medical community and health policy on these issues. The system will be tested and validated in collaboration with physicians, associations and patients considering a comprehensive approach that takes into account the heterogeneity of clinical characteristics and lifestyles of participants. The network will include not only the proposing four Patient’s associations but also other external partners interested in the initiative that will be involved in the awareness campaign, with the participation of medical specialists (gynecologists, obstetricians, pediatrists, neurologists, neurosurgeons, etc.) of several Hospitals throughout Puglia region that will contribute to present the initiative to the patients.