CWS study group – registries, recommendations and trials

Author:  Maria Yiallouros, Editor:  Maria Yiallouros, Reviewer:  PD Dr. med. Monika Sparber-Sauer, English Translation:  Dr. med. Gesche Riabowol (nee Tallen), Last modification: 2023/06/27 https://kinderkrebsinfo.de/doi/e110986

SoTiSaR / SoTiSaR 2.0

The CWS Registry „SoTiSaR / in future to be replaced by SoTiSaR 2.0“ (Soft Tissue Sarcoma Registry) provides broad registration of all children, adolescents and young adults with soft tissue sarcomas and tumours.

The registry provides the precondition for conducting clinical trials and associated studies as well as advice for treating physicians. It also promotes the collaboration with other studies / task forces such as LESS (Late Effects Surveillance System, a project to assess late effects of therapy) or the Working group Quality of Life (studies on assessing quality of life after cancer treatment), and it allows data exchange with other registries such as the childhood cancer registry in Mainz and Kiel.

It is only by a complete, unbiased recruitment of all patients with these rare tumours (and their treatment courses), that knowledge of the realistic probabilities of survival as well as a deeper understanding of the epidemiology of this tumour group is possible. This may result in the identification of new prognostic factors and treatment approaches. Thus, the major goal is to further improve therapy and confirm its quality. Even the rare adult patients with rhabdomyosarcoma (RMS) are supposed to be treated as per current CWS Guidance or according to the future European guideline, respectively, and to be registered in the CWS registry SoTiSaR / SoTiSaR 2.0. SoTiSaR 2.0 will be opened in 2024.

The first clinical phase-III study based on this model was trial CWS-2007-HR, opened July 1, 2009; patient recruitment has been stopped for this trial by now.

CWS Guidance / ERN Guidance / European and international consensus recommendations

CWS Guidance – which was developed on the basis of the European trials CWS 81, 86, 91, 96 und 2002P as well as other international studies – provides the optimal standardized treatment recommendations for different soft tissue sarcomas and soft tissue tumours.

Up to now, patients with rhabdomyosarcoma (RMS) have been treated according to a European standard that had been developed in 2004 by the CWS study group and experts of other Euopean study groups in the framework of the „European paediatric Soft Tissue Sarcoma Study Group (EpSSG)“. In the meantime, this standard therapy has been updated within the European ERN guideline. However, treatment as per CWS guidance is still possible, too. In addition, guidelines for surgery, radiotherapy, pathology and radiology exist, which have been developed under consideration of contemporary therapies, including the CWS Guidance.

There are currently European and international consensus recommendations for the multiple entities of non-rhabdomyosarcoma soft tissue sarcomas (NRSTS), which will replace those of the CWS Guidance in the future. Many children’s hospitals and treatment centres all over Germany as well as other European countries are treating children and adolescents with a soft tissue sarcoma, rare soft tissue tumour or relapse according to these guidelines. The treatment recommendations are available as scientific publications and will be accessible on the CWS homepage in the future as well.

CWS Study Centre

CWS Chair: PD Dr. med. M. Sparber-Sauer (Klinikum Stuttgart Olgahospital), PD Dr. med. M. Ebinger (Universitätsklinikum Tübingen)