The Federation of Italian Diabetology Societies (FeSDI), which brings together AMD and SID, welcomed the draft decree prepared by the Italian Ministry of Health to regulate the organization and operation of the National Diabetes Registry, on which the Data Protection Authority issued a favorable opinion on August 6.
National Diabetes Registry: Objectives and Scope
The Registry will cover type 1 diabetes, type 2 diabetes, gestational diabetes, and other forms of diabetes. Its goal is to produce uniform and standardized information on disease prevalence and incidence, treatments, complications, and survival.
Among its planned purposes are monitoring access to care and the quality of care, evaluating outcomes, identifying high-risk groups, and supporting scientific research and health planning.
A Tool for Diabetes Governance
According to FeSDI, launching the Registry fits into the path outlined by the General Assembly on Diabetes, which identified among its priorities the strengthening of digitalization, epidemiological knowledge, and the use of data to support health decisions.
For Salvatore De Cosmo, president of FeSDI and AMD, the availability of structured and standardized data will allow a better understanding of Italy’s diabetes landscape, enable measurement of the quality and outcomes of care, and support health planning with stronger evidence.
Integration Between Regional and National Registries
The decree draft envisions close collaboration between the national and regional levels. Regions and autonomous provinces will need to establish their own registries and identify regional reference centers. Data collected at the territorial level will feed into the National Registry on an annual basis.
This model will enable the creation of a common information base while also making it possible to analyze territorial differences in care needs, care pathways, and clinical outcomes.
Improving Care and Research
According to Raffaella Buzzetti, president of SID, the availability of uniform and comparable information will allow for more precise identification of areas requiring corrective intervention, contributing to improved care for people with diabetes.
FeSDI also notes that the decree would provide a national regulatory framework for activities already underway under the European project JACARDI (Joint Action on Cardiovascular Diseases and Diabetes), coordinated by the Istituto Superiore di Sanità, which has piloted models and tools for data collection in preparation for the Registry’s future implementation.
A Step Toward European Standards
The issue of registries and structured data collection is also a European priority. The European Diabetes Forum promotes the spread of diabetes registries and standardized sets of outcomes as tools to improve the quality of care.
According to Angelo Avogaro, chair of EUDF Italia, full implementation of the National Registry would bring Italy closer to European countries already equipped with structured monitoring systems, facilitating outcome comparisons, identifying disparities, and enabling health planning that is increasingly evidence-based.
Abbonati a Karla Miller
