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Network presentation

Welcome to the ENDOCAN-TUTHYREF (TUmeurs THYroïdiennes REFractaires) website.

This site aims to provide information to the general public and healthcare professionals about the network, refractory thyroid cancers, and their management.






ENDOCAN-TUTHYREF is a network of physicians with different specialties (endocrinologists, oncologists, nuclear medicine, surgeons, pathologists, etc.) who specialize in the management of refractory thyroid cancers. It is a network of "rare cancers" established in 2009 and receives financial support from INCa for its operation [].

The network consists of a set of competence centers and affiliated centers distributed throughout metropolitan and overseas territories.

Its objective is to standardize the management modalities of these pathologies nationwide and ensure that all French patients have access to optimal care and therapeutic innovations.

The pathologies managed by the ENDOCAN-TUTHYREF network are:

Differentiated thyroid cancers (papillary, vesicular, and poorly differentiated) locally advanced or metastatic and refractory to iodine-131, defined by one of the following three characteristics: no iodine-131 uptake in at least one target lesion, disease progression within 12 months following iodine-131 treatment, persistence of the disease after administration of a cumulative activity of 22GBq (600 mCi), or locally advanced disease inoperable from the outset. Read

  • Anaplastic thyroid cancer
  • Locally advanced or metastatic medullary thyroid cancers that are not responsive to standard treatments. Read

These cancers are rare, with an estimated incidence in France of 350-400 new patients per year, comprising around 250 differentiated cancers, 50 medullary cancers and 100 anaplastic cancers.


The ENDOCAN-TUTHYREF network is responsible for carrying out 9 missions defined by the French National Cancer Institute (INCa):


  1. Facilitate access to expertise for all patients: National Multidisciplinary Consultation Meetings (RCP) organized twice a month, designation of expert centers, organization of double anatomo-pathological readings, procedures, clinical data collections.

  2. Development of guidelines specific to the ENDOCAN-TUTHYREF network.

  3. Identify referral missions: clinical trials dedicated to refractory thyroid cancers, early phase I/II trials, expertise in surgical and interventional radiology (RI), vectorized internal radiotherapy (VIR), etc.

  4. National anonymized clinical database.

  5. Develop clinical and translational research projects that are discussed and collaboratively validated.

  6. Develop and ensure standardization of university/non-university education on refractory thyroid cancers.

  7. Strengthen links, communication, and education for patients.

  8. Structure, coordinate, and communicate.

  9. Ensure monitoring of quality and safety indicators defined by the network for INCa.


The ENDOCAN TUTHYREF network includes one or more expert centers per region in metropolitan France and the overseas territories. The two national coordinating centers are Gustave Roussy and University Hospital Center (UHC) of Lyon : they lead the network with the support of the steering committee and are responsible for achieving the objectives.

Each regional expert center of the ENDOCAN TUTHYREF network is composed of physicians from different specialties involved in the management of refractory or advanced thyroid cancers: endocrinology, surgery, nuclear medicine, medical oncology, anatomo-pathology, radiotherapy, biology, diagnostic and interventional radiology, gathered within a Regional Multidisciplinary Consultation Meeting (RCP).

The regional expert center's mission is to manage patients with refractory thyroid tumors at the regional level and record anonymized patient data in the national database, in the absence of patient opposition to this recording. It organizes this management within regional RCPs, which discuss the treatments and/or surveillance to be implemented, assess the indication for molecular tests, request an anatomo-pathological rereading by an expert from the ENDOCAN-path network to confirm the diagnosis, and discuss possible therapeutic trials and medical studies that could be proposed to the patient.

When additional multidisciplinary opinions from physicians in different regional expert centers are needed, cases can be presented and discussed at the national RCP, which takes place twice a month in the form of web conferences.

The regional and national RCPs of the ENDOCAN-TUTHYREF network thus allow every French patient, regardless of their location in the country, to access the best possible medical care tailored to their condition and to access therapeutic innovation and open clinical trials in France for refractory thyroid cancers.


The ENDOCAN TUTHYREF network is animated and managed nationally by the steering committee (Steering Committee), which meets once a month via web conference. The Steering Committee ensures the coordination of working groups responsible for implementing the detailed missions above. The network coordinators are responsible for budgets and the allocation of funds to different regional centers. They annually report on the use of INCa budgets to the Steering Committee and the network's General Assembly. The Steering Committee also acts as the scientific council of the network, meeting every two months to discuss various research projects led by network physicians.

The annual ENDOCAN-TUTHYREF meeting, attended by all network stakeholders, allows for comprehensive information for all these actors and the selection and initiation of consensus projects within the network