A mapping of rare neurodegenerative diseases in Albania possible thanks to the collaboration between Albanian and Apulian health facilities based on Jamio openwork technology: this is, in a nutshell, 'NDAL - Neurodegenerative Diseases ALbania', the innovative cross-border project in health care coordinated by the Neurodegenerative Diseases Center of the University of Bari, 'Card. G. Panico' of Tricase and funded by the Apulia Region.
Openwork is IT partner in the initiative; data on rare neugenerative diseases contained in medical records and collected from ongoing patient monitoring will be collected and managed on its BPM platform, forming a computerized registry to support Albania's rare disease health policies.
With data management on the platform, it will also be possible to describe and analyze the full spectrum of disease in a geographic area that currently lacks an adequate system for the recognition, identification, reporting, and data collection of these diseases. All enabled centers will have access to the GDPR-compliant, securely searchable disease registry hosted on a cloud-based platform.
The project is based on the experience gained with 'SLAPDEM - Amyotrophic Lateral Sclerosis and Rare Dementias,'(www.slapddem.it) the Apulian computerized registry for the census of patients with Amyotrophic Lateral Sclerosis and Rare Dementias created with Jamio openwork tecnolgy for the University of Bari Aldo Moro - Department of Basic Medical Sciences, Neuroscience and Sense Organs.
