Periodic Reporting for period 4 - SELNET (Sarcoma as a model to improve diagnosis and clinical care of rare tumors through a European and Latin American multidisciplinary network)
Reporting period: 2023-01-01 to 2023-12-31
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.
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, USA, Switzerland, Paraguay, Panamá 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 12 months of the Project (Month 48-60) SELNET highlights following results:
• Training: The educational activities addressed to medical specialists and trainees, as well as researchers, are being continuously collected and published. These initiatives include both in-person and online events
• Enlargement of the Network to new countries and different kind of stakeholders
• We have reached the registry more of 5000 clinical cases (patients) in the SELNET designed on-line platform, providing a robust repository for research and analysis within the network.
• We have progressed in the pathological peer-review program, with several cases from CELAC analysed in the different European Member Sates of the Consortium, and with great positive results.
• We are working on clinical trials proposal to be offered within the SELNET Network.
• 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).
• 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 advanced, with almost all the different CELAC countries, in the adoption of a specific model of National Sarcoma Reference Centers per each country.
• 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, USA, Switzerland, Paraguay, Panamá 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 12 months of the Project (Month 48-60) SELNET highlights following results:
• Training: The educational activities addressed to medical specialists and trainees, as well as researchers, are being continuously collected and published. These initiatives include both in-person and online events
• Enlargement of the Network to new countries and different kind of stakeholders
• We have reached the registry more of 5000 clinical cases (patients) in the SELNET designed on-line platform, providing a robust repository for research and analysis within the network.
• We have progressed in the pathological peer-review program, with several cases from CELAC analysed in the different European Member Sates of the Consortium, and with great positive results.
• We are working on clinical trials proposal to be offered within the SELNET Network.
• 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).
• 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 advanced, 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 SELNET sarcoma biobank 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. This would lead to greater clinical efficacy in MSFT, EMC, AS and DSRCT, 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.
The project has contributed to the creation of a network of sarcoma specialist in Latin-America, and SELNET has facilitated access to diagnostic and educational tools for these specialists in CELAC countries. SELNET has consequently enhanced the awareness on sarcoma of the CELAC medical community, and has favoured the interaction among specialist of Latin-America and Europe. One of the activities of SELNET exemplifying these interactions, is the monthly multidisciplinary board, with both educational and also patient management implications. These MDTs, together with the pathological peer-review, contribute to a more accurate diagnosis and management of sarcoma patients in CELAC countries.
One of the achievements of the project, with a potential big impact in management of sarcoma patients, is the development and implementation of Clinical Practice Guidelines. The first SELNET CPGs are already in place and its adaption and adoption at the national level in each SELNET country will improve the management of sarcoma patients. In these CPGs, in addition to the specialists involved, patient advocacy groups have also participated.
The SELNET registry, currently actively recruiting patients will serve as institutional database for many SELNET members and is gathering data in order to have a realistic picture of sarcoma patients management in CELAC countries. The analysis of this data, and the comparison between periods will also be a way of having clues regarding the impact of the project and the adherence to CPGs.
SELNET aims to stimulate both clinical and preclinical sarcoma research in CELAC. Costa Rica is currently working on the development of its first biobank, which will undoubtedly contribute to sarcoma research. SELNET translational projects will potentially provide rational for future clinical trial proposals.
Several academic clinical trials proposals, leaded by SELNET partners have been discussed and proposed as investigator-initiated studies.
-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 SELNET sarcoma biobank 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. This would lead to greater clinical efficacy in MSFT, EMC, AS and DSRCT, 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.
The project has contributed to the creation of a network of sarcoma specialist in Latin-America, and SELNET has facilitated access to diagnostic and educational tools for these specialists in CELAC countries. SELNET has consequently enhanced the awareness on sarcoma of the CELAC medical community, and has favoured the interaction among specialist of Latin-America and Europe. One of the activities of SELNET exemplifying these interactions, is the monthly multidisciplinary board, with both educational and also patient management implications. These MDTs, together with the pathological peer-review, contribute to a more accurate diagnosis and management of sarcoma patients in CELAC countries.
One of the achievements of the project, with a potential big impact in management of sarcoma patients, is the development and implementation of Clinical Practice Guidelines. The first SELNET CPGs are already in place and its adaption and adoption at the national level in each SELNET country will improve the management of sarcoma patients. In these CPGs, in addition to the specialists involved, patient advocacy groups have also participated.
The SELNET registry, currently actively recruiting patients will serve as institutional database for many SELNET members and is gathering data in order to have a realistic picture of sarcoma patients management in CELAC countries. The analysis of this data, and the comparison between periods will also be a way of having clues regarding the impact of the project and the adherence to CPGs.
SELNET aims to stimulate both clinical and preclinical sarcoma research in CELAC. Costa Rica is currently working on the development of its first biobank, which will undoubtedly contribute to sarcoma research. SELNET translational projects will potentially provide rational for future clinical trial proposals.
Several academic clinical trials proposals, leaded by SELNET partners have been discussed and proposed as investigator-initiated studies.