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Sarcoma as a model to improve diagnosis and clinical care of rare tumors through a European and Latin American multidisciplinary network

Periodic Reporting for period 2 - SELNET (Sarcoma as a model to improve diagnosis and clinical care of rare tumors through a European and Latin American multidisciplinary network)

Reporting period: 2020-07-01 to 2021-12-31

Rare cancers are associated with poor survival, accounting for 22% of new cancer diagnoses in Europe, and 30% of cancer deaths. Sarcomas are a heterogeneous group of life-threatening rare solid malignancies affecting soft and bone tissues, representing 10% of rare tumors and around 2% of adult tumors, with an incidence of 5.9/100,000/year in Europe. Appropriate management of sarcoma patients is hindered by the absence of referral policies to reference centers (RCs), incorrect or delayed diagnosis, non-adherence of therapies to clinical practice guidelines (CPGs), and lack of expertise by practitioners, which increases the risk of relapse and death. These problems worsen in the Community of Latin American and Caribbean States (CELAC) due to the scarcity or complete unavailability of RCs, expert pathologists, multidisciplinary tumor boards (MTBs), new cancer drugs, clinical trials, patient registry data, and financial resources. Hence, the SELNET project creates a European and Latin American multidisciplinary network of clinical and translational specialists to improve diagnosis and clinical care in sarcomas, with the aim of validating a collaborative model replicable in other rare tumors and in other countries. Recognized cancer centers and research groups of Spain, Italy, France, Mexico, Brazil, Argentina, Costa Rica, and Peru are contributing to better rare cancer care by fostering RCs, healthcare barrier analysis, CPGs, and medical education as key improvement drivers. The core of the research work focuses on improving diagnosis and prognosis of adult sarcoma patients through the creation of pathological diagnosis networks, MTBs, the conduct of an international registry-based observational study to assess clinical management quality and prognostic factors, and the implementation of an strategic translational research program to develop intercontinental sarcoma biobanks, preclinical models, and a translational study with drugs in rare adult sarcoma subtypes.
As key developments during the first 18 months of the Project, SELNET highlights following results:
• Ethical approvals of the observational and translational studies and Sites activations
• Registry of the clinical data in the SELNET designed on-line platform
• Pathological peer-review initiation
• Clinical practice guidelines and Reference Centers requirements defined and agreed
• Enlargement of the Network to new countries: Chile, Bolivia, Colombia, EEUU, and different kind of stakeholders: Hospitals/Patients advocacy groups
• Design of SELNET Network own clinical trials
• Training: scientific meeting, workshops, online presentations. CME brochure available

As key developments during the next 18 months of the Project (Month 36) SELNET highlights following results:

Due to the pandemic situtation, whis has had a considerably harder impact in the CELAC countries, the results achieved are not the expected ones for this period, but we can highlight several goals completed:

• Training: scientific meeting, workshops, online presentations. CME brochure available. However, due to COVID-19 the face-to-face fellowships of latinamerican physisicians in the UE Member States were not allowed during this period.
• Enlargement of the Network to new countries and different kind of stakeholders: Hospitals (eg. Instituto Nacional de cancer de Brasil - INCA-)/Patients advocacy groups
• We have reached the registry of 1100 clinica cases (patients) in the SELNET designed on-line platform
• We have progressed in the pathological peer-review program, with several cases from CELAC analyzed in the different European Member Sates of the Consortium, and with great positive results.
• We are designing the SELNET Network own clinical trials.
• We are designing new projects in order to improve the impact of SELNET and get diffusion of the data obtained from SELNET multidisciplinary tumor boards (MDT), creating a journal with the most interesting clinical cases from these
periodic MDTs.
• Publication of the "SELNET Clinical Practice Guidelines for soft tissue sarcoma and GIST" in the scientif journal "Cancer Treatment Reviews" as a result of the big efforts from the consortium. Right now we are having periodic and face-to-
face meetings with the different CELAC countries in order to obtain these guidelines adoption from the different countries.
• At the same time we have advance, with almost all the different CELAC countries, in the adoption of a specific model of National Sarcoma Reference Centers per each country.
The SELNET project seeks the following impacts:

• Identifying high-risk patients, in diverse CELAC countries, affected by aggressive, life-threatening rare tumors, such as sarcomas, to improve their diagnosis and prognosis.
• Providing clear clinical evidence on the current status of sarcoma management in CELAC countries in order to implement optimization actions.
• The creation of sarcoma biobanks and preclinical models of sarcoma will empower rare tumor research in Latin America.
• A better understanding of the role of current sarcoma drugs in the activation of antitumor immune response, and the validation of immune-related and angiogenic predictive biomarkers would lead to greater clinical efficacy in MSFT, EMC and AS, while reducing health care costs and contributing to the development of new treatments for other rare STS.
• Providing new insights in the mechanism of action of current drugs for the development of targeted therapies in rare cancers
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