A mapping of rare neurodegenerative diseases in Albania made possible thanks to the collaboration between Albanian and Apulian healthcare facilities based on Jamio openwork : this is, in short, ' NDAL – N eurodegenerative D iseases AL bania ', the innovative cross-border healthcare project coordinated by the Centre for Neurodegenerative Diseases of the University of Bari the 'Card. G. Panico' healthcare facilities of Tricase and financed by the Puglia Region.
Openwork is the initiative's IT partner ; its BPM will collect and manage data on rare neurodegenerative diseases contained in medical records and collected through ongoing patient monitoring, creating a computerized registry to support Albania's rare disease healthcare policies.
Thanks to data management on the platform, it will also be possible to describe and analyze the entire spectrum of the disease in a geographical area that currently lacks an adequate system for recognizing, identifying, reporting, and collecting data on these conditions. All authorized centers will have access to the disease registry, which can be consulted securely and in compliance with GDPR , hosted on a cloud .
The project is based on the experience gained with ' SLAPDEM – Amyotrophic Lateral Sclerosis and Rare Dementias ' ( www.slapddem.it ), the computerized registry for the Apulian region for the census of patients affected by Amyotrophic Lateral Sclerosis and rare dementia, created using Jamio openwork technology for the University of Bari Aldo Moro – Department of Basic Medical Sciences, Neurosciences and Sense Organs.
