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Our Mission: Improving theQuality of
Sarcoma Patient Care -
The Swiss Sarcoma Network is aninterdisciplinary Platform
of sarcoma experts -
Specialists across disciplinesrepresent the Swiss Sarcoma Board
Introduction
The SwissSarcomaNetwork aims at improving and ensuring the quality of sarcoma patient care in Switzerland.
Sarcomas belong to the rare cancers, representing about 1% of all malignant tumors and showing a wide variety of histologically as well as biologically different entities. Long term outcome is largely depending on consistent diagnostic and therapeutic concepts involving all specialities. Worldwide, up to half of the sarcoma patients are not managed according to established clinical guidelines which has considerable impact on long term outcome. In the last years, efforts to improve outcome have been directed towards centralization of care, hereby assuming that volume equals expertise, availability of best technical equipment and hence quality. This centralization approach strongly reflects the view of the health care system and to a far less extent the process from the patient’s first presentation with symptoms until the end of sarcoma multimodal therapy and beyond. For reasons such as mountainous geography, four different main languages and the reluctance of patients to move and travel far, Switzerland has many hospitals within short distances which are more or less independently organized within 26 cantons/counties. Because of these conditions, sarcoma experts are working in many different institutions. For the present time, only a minority is organized within dedicated treatment networks and hence does not follow established guidelines for the management of sarcoma patients. Even in regions with a high density of medical services, insufficiently planned excisions of a lump, on histological work up turning out to be a sarcoma, occur in more than 20%. Furthermore, sarcoma surgery is subdivided into anatomical regions, for instance visceral, thoracic or orthopedic, as well as the tissue of tumor origin such as bone or soft tissue, although they all share the same biological background. Children and adolescents traditionally have been cared for by pediatric oncologists, in Switzerland provided by one of the 9 SPOG centers (Swiss Pediatric Oncology Group) building the network of pediatric oncology in Switzerland. No institutionalized settings exist for the special group of young adults although there is enough evidence that not only tumor biology is different compared to later in life but also their special needs are not fully met in adult oncologies. Taken all these facts together, it is obvious that sarcoma expertise must not be attributed to one single person, discipline or even institution. The complexity of the management of a sarcoma patient is far too complex and requires close collaboration of all involved disciplines on an equivalent background.
In order to improve and ensure the quality of the entire process in the management of a sarcoma patients - right from the first symptoms to the end of multimodal and multidisciplinary treatment and even beyond - we feel to rethink and reorganize our current approach of sarcoma treatment and to define clinical practical guidelines to be followed by all sarcoma care givers.
p>Instead of institutions keeping on fighting for patient numbers, sarcoma experts from all interested institutions are invited to work together in the frame of a national network in order to continuously share, exchange and improve their experience and knowledge and define diagnostic and therapeutic pathways to be followed by all care givers. Decisions on procedures and management will then no longer be depending on the opinion of one person only. We therefore do believe that the constitution of a «network of excellence» may represent an indispensable alternative to the currently ongoing unsatisfying geographic centralization efforts that do not meet all the complex needs and concerns in the comprehensive management of sarcoma patients of all age groups.For all these reasons, we establish the SwissSarcomaNetwork to bring sarcoma experts together across and beyond institutions in Switzerland.
The main objective of the SwissSarcomaNetwork is to improve and ensure the quality of sarcoma patient care in Switzerland.
Missions
- To foster inter-institutional and interdisciplinary sarcoma care roadmaps covering the complete patients pathway from the first presentation to the end of treatment and follow up care for pediatric, adolescent and adult patients with malignant bone and soft tissue tumors, independent of anatomical sites.
- To improve the quality of sarcoma patient care, through continued education, teaching and research thereby establishing educational policies.
- To build the sarcoma service platform, to strengthen and provide sarcoma competence in Switzerland for pediatric, adolescent and adult patients through close cooperation among all participating institutions .
- To establish diagnostic and clinical pathways including binding recommendations und requirements for all diagnostic and therapeutic modalities.
- To establish a prospective sarcoma data base (registry) enabling the network to foster research projects and to become an attractive international partner for collaborations both on clinical trials as well as research projects.
- To establish a quality assurance system on outcome and comprehensive care processes.
Objectives
- To run a weekly tumor board, the SwissSarcomaBoard, to interdisciplinarily and interinstitutionally define risk-adapted, patient-focused pre- and post-treatment strategies for each sarcoma patient across Switzerland.
- Shared care by interinstitutional exchange of specialized surgical experts in their field.
- To establish and maintain a prospective sarcoma data base (registry) by web-based access.
- To define and ensure indicators for quality of care of all sarcoma patients.
- To establish a quality assurance system on outcome and comprehensive care processes.
- To establish educational policies comprising teaching, research and organization of continuous education events in the field.
The mission of the SwissSarcomaNetwork is to provide excellent quality of sarcoma patient care in Switzerland. To achieve this, international embedding of the SwissSarcomaNetwork (SSN) is of the utmost importance, to foster not only the medical exchange to set, review and improve the highest possible quality of care in Switzerland, but also to team up with other well established international networks. For these reasons, we have established an International Advisory Board of Sarcoma Experts.
The missions of the International Advisory Board for the SSN include:
- to provide second opinions for patients being discussed at the SwissSarcomaBoard
- to support the establishment of Sarcoma Guidelines (based on ESMO and existing Swiss Guidelines) as well as good clinical practice standards within the SSN
- to support the implementation and the use of the SwissSarcomaRegister to define quality sarcoma care
- to provide yearly instructional course lectures in their domain
- to act as advisor for the establishment of a E-learning tool.
The international Sarcoma Advisory Board of the SSN represents an international group of world renowned experts in the sarcoma discipline, and includes the following experts:
Prof. Axel LeCesne
Coordinator of the International Advisory Board of SSNFounder and Coordinator of the French Sarcoma Network
Further info:
gustaveroussy.fr, canceropole-idf.fr
Prof. Jean-Yves Blay
Founder and Coordinator of the French Sarcoma Network
Chairman of the World Sarcoma Network
Further info:
esmo.org
Prof. Javier Martin-Broto
Founder & Vice-President GEIS (Spanish Group for Research on Sarcomas)
Founder & Consortium Coordinator SELNET (Sarcoma European LatinAmerican Network)
Prof. Alessandro Gronchi
Chair Soft Tissue Sarcoma Committee of the Italian Sarcoma Group (ISG)
President of Italian Society of Surgical Oncology
Past-Chair of EORTC Soft tissue and Bone Sarcoma Group
Past-President of CTOS
Founder of Trans-Atlantic Retro-Peritoneal Sarcoma Working Group (TARPSWG)
The Swiss Sarcoma Network
The need to establish an interdisciplinary sarcoma platform to foster the exchange among sarcoma experts in Switzerland was recognized in 2013, when the «Gesundheitsdirektorenkonferenz» (GDK) re-organized the treatment of pediatric sarcoma patients. To support this process, the Swiss National Sarcoma Advisory Board (SNSAB) – initially a loose national association of sarcoma interested physicians - was concurrently established to define clinical practice guidelines for the treatment and work-up of sarcoma patients, to guide collaboration between sarcoma centers and other hospitals and to set up a cohort study. The newly established SNSAB has proven to be appreciated and successful which lead to the mandate by IV-HSM in 2016 to elaborate a concept how to organize sarcoma care in Switzerland.
However, this process was then suspended mainly for a lack of manpower capacity on part of IV-HSM to push this process further, but also because the SNSAB was only constituted of interested individuals and not of representatives of institutions and societies.
Particularly in sarcoma treatment, interdisciplinary cooperation is the key to success. For instance, surgical resections of large sarcomas require the collaboration of the orthopedic and/or visceral surgeon with plastic or vascular surgeons. Therefore, to integrate both, the institutional requirements and the interdisciplinary exchange of sarcoma experts, the SwissSarcomaNetwork (as a society) was founded to address these key requirements to meet the mission and objectives as outlined above.
The SwissSarcomaNetwork is the new nationwide platform of several institutions determined to close collaboration of their sarcoma experts as well as their institutional representatives (please compare SwissSarcomaBoard).
The Swiss Federal Institute of Intellectual Property (www.ige.ch) has registered the brand SwissSarcomaNetwork with the number 742190 into the brand-registry as of January 30, 2020.
The society is an institutionalized platform to organize sarcoma care, research and education on a national level. It commits to the following statutes:
Statutes:
The society SwissSarcomaNetwork aims to foster the interinstitutional and interdisciplinary work-up, treatment and follow-up care of all patients with bone and soft tissue tumors (specifically sarcomas) by concentration of competence, education and research as well as ressources. The main objective is to improve and ensure quality of care and patient outcome.
The society organizes the SwissSarcomaBoard and maintains a data registry, through which patient outcome is assessed by indicators of quality, to improve transparency both for patients and legal body/health care authorities, and to organize research projects and collaborations with international partners.
In the following link, you find a suggestion for the statutes.
The following links provide an overview on the organisation incl. statutes and organigram.
The The SwissSarcomaNetwork is open for all institutions to participate. Prerequisite is the commitment to the missions and objectives, and active participation.
Each participating institution is member of the society «Trägerverein», which runs the SwissSarcomaNetwork.
An institution determines an institutional representative (which may be a physician or the CEO) who together represent the Board of the society, as well as their clinical experts.
All the institutional representatives and all the clinical sarcoma experts constitute the members of the SwissSarcomaNetwork. They elect the Board members of the network and as well as its chair.
- Committment to live up for the missions and objectives - summarized in the statutes - of the society.
- Represent all consecutive sarcoma patients at the SwissSarcomaBoard.
- Treat patients according to good clinical practice guidelines as well as standard operating procedures (SOP).
- Provide clinical data into web-based ANQ-registry, after obtaining informed consent from patients.
- Yearly fee depending on the number of delegates, which is determined by the Board of the society.
At the launch of the SwissSarcomaNetwork, seven institutions from the German part of Switzerland committed to participate and live up to the mission and objectives, including both pediatric and adult hospitals, as well as University hospitals, major supra-regional center based hospitals and cantonal hospitals.
The SwissSarcomaNetwork is open to all institutions who are willing to commit themselves to the missions and objectives of the society. Applications with a letter of intent are directly addressed to the Geschäftsstelle (address provided below).
The Swiss Sarcoma Board
The SwissSarcomaBoard as integral part of the SwissSarcomaNetwork is uniting sarcoma specialists from all disciplines and from all over Switzerland to discuss and determine the work-up, treatment strategies and follow-up care for children, adolescents and adult patients with bone and soft tissue tumors.
The SwissSarcomaBoard establishes and ensures clinical practice guidelines, standard operating procedures, organizes the weekly Sarcoma Board meeting, as well as the yearly Swiss Sarcoma Symposium.
The SwissSarcomaBoard is responsible for teaching and research. It makes a commitment to foster education not only for the experts, but also for young colleagues and students, to carry on excellence also in the future.
The SwissSarcomaBoard meeting takes place every Tuesday at 5 o'clock. There are meeting rooms in Basel, Bellinzona, Chur, Luzern and Winterthur. These meeting rooms are connected via Telemedicine (provided by ActVisual), and every one involved in patient treatment or part of the network can log in to follow and participate the discussion.
Who can present? And how do I do it?
Everyone who is involved in patient care or has a patient with the suspicion of sarcoma can log in. To log in, please go to https://ksw.myhealthcare.ch/join/mXts5SXFFO and download the software.
Importantly, registration is required. Send an email to to get the access code.
How to present a patient?
To present a case, it is important to follow the SOPs established by the network.
The following specialists listed across the disciplines represent the members of the SwissSarcomaBoard and thereby constitute the SwissSarcomaService.
Reference Pathology
Reference Orthopedic Oncology
Thoracic - Surgery
Radiation Oncology
Medical Oncology
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