The Mariani Foundation Research Networks
Neurological disorders in children are among the most significant socio-health problems of our times, for two reasons: first, those affected need long-term support, and second, there is currently a lack of adequate care. In line with the efforts of the European Community, which is heavily promoting networking, the Mariani Foundation Networks project, which arose from a specific research call issued by the Foundation, is an expression of a broad strategic vision that reflects an “open data-open science” approach.
The Networks are multicentre registry platforms devoted to different neurological disease areas: they represent an innovative turning point and an approach that looks beyond the horizons and goals reached to date. Creating networks of different centres dealing with the same diseases is a means of standardising the methods used to collect and share data.
Over time, this allows the development of coordinated registries, which are a very precious resource for research, especially in the field of rare genetic diseases.
These registries help to drive advances in scientific knowledge that, it is hoped, might be translated into better quality of life for affected children and their families.