A new platform and new features for the Duchenne and Becker Patient Registry — BlueCompanion is Parent Project's new technical partner

The DMD/BMD Italy Patient Registry, promoted and managed by the patients' organisation Parent Project, is undergoing a phase of important renewal. The database — collecting demographic and clinical information on patients with Duchenne and Becker muscular dystrophy — has recently moved to a new, more functional platform, with its technical management taken over by BlueCompanion.

What is the Patient Registry — The Patient Registry facilitates a fundamental process of mutual information between the worlds of patients and research. It allows patients to know if they can 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 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 now collect data from around 1,000 patients. It has evolved in structure, becoming part of the network of international registries connected by the global Treat-NMD network, harmonising 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 often require adapting and varying the types, quantity and quality of collected data.

Full article: https://www.parentproject.it/