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National Rare Tumor Network

Assistance Networks

Pediatric tumors For this family, the following diagnostic groups are grouped: For the “pediatric tumors” category, the database includes ERN centers, the centers selected for each Region/PA with production volumes within the 90th percentile, integrated with AIEOP centers (Italian Association of Pediatric Hematology and Oncology). Indicators characterizing the center are reported for each facility. For this group, user centers have been identified for each pathology, while the identification of functional network nodes refers to the characterization of the entire structure. In pediatric tumors, the central role of pathological diagnostic laboratories is essential for establishing the diagnosis. The national centers are listed below: National List of Laboratories for the Anatomopathological Diagnostics of Pediatric Tumors

The Agreement signed between the Government, the Regions, and the Autonomous Provinces of Trento and Bolzano at the State-Regions Conference in its session of 21 September 2017 provided for the creation of the “National Network of Rare Tumors (RNTR)” (Rep. Atti n. 158/CSR) and the establishment within AGENAS of the functional coordination of the National Network of Rare Tumors, its composition renewed by Decree of the Minister of Health of 7 March 2022.

The National Rare Tumor Network is conceived by the State-Regions Agreement as a “hub & spoke” network, where a participating center can “behave” in the dynamics of online “teleconsultations” as a “User” (i.e., spoke) or as a “Provider” (i.e., hub).

The User Centers are:

    • the centres belonging to the three European Reference Networks (ERNs) on rare tumors, namely EURACAN for rare solid tumors in adults, EUROBLOOD for adult haematological oncology tumors and PAEDCAN for pediatric tumors;
    • the non-ERN centres, “which, based on the analysis of the SDOs, fall within the fourth quartile of the distribution of cases treated”, i.e. in the 25% of centres with the highest volume of cases treated;
    • centers specifically proposed by the Regions to the Functional Coordination of the National Rare Tumor Network at AGENAS, according to motivated criteria.

Provider centers define themselves as: “a center among users authorized to provide teleconsultations, with high professional skills and services aimed at the treatment of these tumor pathologies”.

Given the high specialization of the provider centers Throughout the country, the National Network provides a map of these centers by family and by individual tumor pathology, so that regions that do not have reference centers can communicate with national provider centers within a network.

Functional Network Nodes: These are centers that function within the Network’s User Centers. Their task is to integrate—where deemed necessary—the appropriate patient care provided by the User Center itself, but to provide only a portion of the patient care pathway, not to define it. The RNTR is unified, but recognizes and values ​​the differences between the three families of rare tumors that relate to

Rare solid tumors of adults For rare solid tumors in adults, the reference ERN is the EURACAN network. It is divided into “domains,” which correspond to the diagnoses listed below. Classification of rare solid tumors in adults: Some rare adult solid tumors, such as neuroendocrine tumors, have virtually no specific identifier and are therefore not represented in the relevant volumes from the SDOs. The 28 Italian institutions participating in EURACAN have received accreditation for individual domains. For the selection of centers operating at least as User centers, it is assumed that all EURACAN participating centers are automatically participating in the National Rare Tumor Network for all domains of rare adult solid tumors. Additionally, as provided for by the SR Agreement, centers with production volumes and centers proposed by the Regions/PAs and evaluated by the National Coordination Committee are also included.
Adult hematological oncology tumors Adult hematological oncology tumors For this family, the following diagnostic groups are grouped: The onco-haematological network, thus formed, includes the ERN centers, the centers selected for each region with production volumes within the fourth quartile, as foreseen by the State-Region Agreement, integrated with the centers belonging to the GIMEMA professional network (Italian Group for Adult Haematological Diseases) and further reviewed and integrated by the Italian Lymphoma Foundation, the centers accredited for the collection of stem cells and the list of centers accredited by the State-Regions Confederation for stem cell transplantation (GITMO).
Pediatric tumors For this family, the following diagnostic groups are grouped: For the “pediatric tumors” category, the database includes ERN centers, the centers selected for each Region/PA with production volumes within the 90th percentile, integrated with AIEOP centers (Italian Association of Pediatric Hematology and Oncology). Indicators characterizing the center are reported for each facility. For this group, user centers have been identified for each pathology, while the identification of functional network nodes refers to the characterization of the entire structure. In pediatric tumors, the central role of pathological diagnostic laboratories is essential for establishing the diagnosis. The national centers are listed below: National List of Laboratories for the Anatomopathological Diagnostics of Pediatric Tumors