The Agreement signed between the Government, the Regions, and the Autonomous Provinces of Trento and Bolzano at the State-Regions Conference in its meeting of September 21, 2017, provided for the creation of the “National Rare Tumor Network (RNTR)” (Rep. Atti No. 158/CSR) and the establishment of the Functional Coordination of the National Rare Tumor Network within AGENAS, whose composition was renewed by Decree of the Minister of Health on March 7, 2022.
The National Rare Tumor Network is conceived by the State-Regions Agreement as a “hub & spoke” network, where a participating center can act as a “User” (i.e., spoke) or a “Provider” (i.e., hub) in the dynamics of online teleconsultations.
User centers are:
Centers belonging to the three European Reference Networks (ERNs) for rare tumors: EURACAN for rare adult solid tumors, EUROBLOOD for adult hematologic oncology tumors, and PAEDCAN for pediatric tumors;
Non-ERN centers “that, based on the SDO analysis, fall within the fourth quartile of the distribution of treated cases,” meaning the 25% of centers with the highest volume of treated cases;
Centers specifically proposed by the Regions to the Functional Coordination of the National Rare Tumor Network at AGENAS, according to justified criteria.
Provider centers are defined as: “a user center authorized to provide teleconsultations, with high levels of professional expertise and services aimed at treating these tumor diseases.”
Given the high level of specialization of provider centers across the country, the National Network provides a map of these centers by family and by individual tumor pathology, so that regions without referral centers can communicate with national provider centers within a network framework.
Functional Network Nodes: These centers are functional to the Network’s User Centers. Their task is to integrate—where deemed necessary—the appropriate patient care provided by the User Center itself, but they only provide part of the patient care pathway, not by defining 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:
- rare tumors sarcomas
- rare gynecological tumors
- rare genitourinary tumors
- rare digestive tract tumors
- rare endocrine tumors
- rare head and neck tumors
- rare thoracic tumors
- rare skin tumors and eye melanoma
- rare tumors central nervous system
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:
- rare tumors leukemias
- rare tumors myelodysplasia
- rare tumors myeloproliferative neoplasms
- rare tumors myeloma
- rare tumors lymphomas
- rare tumors and other lymphomas
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:
- rare pediatric solid tumors
- rare pediatric cns tumors
- rare pediatric retinoblastoma
- rare pediatric leukemias and lymphomas
- pediatric bone sarcomas
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