The DMD/BMD Italy Patient Registry, promoted and managed by the patients’organization Parent Project, is undergoing a phase of important renewal.

This database, which collects demographic and clinical information on patients with Duchenne and Becker muscular dystrophy, in fact, has recently moved to a new, even more functional platform and its technical management has been taken over by  BlueCompanion, a company specialized in providing digital services for the health sector.

What is the Patient Registry

The Patient Registry is a tool that essentially facilitates a fundamental process of mutual information between the worlds of patients and research. It also allows patients to know if it is possible for them to access a clinical trial starting in Italy and to stay informed on the progress of scientific research and on aspects of clinical management, precious for health in daily life. To all intents and purposes it is a means of making patients’ voices heard in a clear and increasingly structured way.

Created in 2008, over time the Registry has grown to the point where it now collects data from around 1000 patients. It has evolved in its structure, becoming part of the network of international registries connected by the global Treat-NMD network, harmonizing with the internationally defined dataset.

What’s new

Parent Project needed a more easily usable and implementable database, capable of adapting flexibly over time. Clinical management and new treatments, in fact, often require adapting and varying the types, quantity and quality of collected data......