GPOH-STS Study Group – trials and registries

Author:  Maria Yiallouros, Editor:  Maria Yiallouros, Reviewer:  Prof. Dr. med. Monika Sparber-Sauer, English Translation:  Dr. med. Gesche Riabowol (geb. Tallen), Last modification: 2026/08/20 https://kinderkrebsinfo.de/doi/e110986

Important notification to begin with: The most recent Cooperative Soft Tissue Sarcoma Study Group (CWS) of the GPOH has been renamed. It is now called “Soft Tissue Sarcoma Study Group of the Society of Paediatric Oncology and Haematology”, in brief: GPOH-STS-Study Group.

Registry SoTiSaR 2.0-NIS

Since the end of 2024, the registry “SoTiSaR 2.0“ (Soft Tissue Sarcoma Registry) has provided broad registration of all children, adolescents and young adults with soft tissue sarcomas and tumours. The goal is to gather knowledge on those diseases, their course, prognosis, aftercare as well as on disease- and treatment-associated longterm sequelae and quality of survival by acquiring and analysing data. SoTiSaR 2.0-NIS is the subsequent registry of the “CWS-SoTiSaR” Registry, which was closed for recruitment on December 31st, 2025.

SoTiSaR 2.0-NIS stands for “Soft Tissue Sarcoma Registry – A non-interventional study (NIS)”. The registry of the Soft Tissue Sarcoma (STS) Study Group of the Society of Paediatric Oncology and Haematology (brief: GPOH‎-STS) documents the treatments given to children, adolescents and adults with soft tissue sarcoma. As a non-interventional study, it also acquires data on longterm sequelae and quality of survival. Unlike a treatment study, the registry only acquires few treatment data.

It is only by a complete, unbiased recruitment of all patients with these rare tumours, that knowledge of the realistic probabilities of survival as well as a deeper understanding of the epidemiology of this tumour group is possible. This is why patients/custodians are being consented to linkage of patients’ treatment with the biobank data of project STS 2.0-BIO. This may result in the identification of new prognostic factors‎ and treatment approaches. Thus, the major goal is to further improve therapy.

For more information on the SoTiSaR 2.0-NIS Registry please see here.

CWS Guidance / ERN Guidance / European and international consensus recommendations

Standard treatment for patients with rhabdomyosarcoma (RMS) and non-rhabdomyosarcoma-like soft tissue sarcomas (NRSTS) has been updated in the European ESCP/ERN guidelines for RMS or NRSTS, respectively (ESCP stands for "European Standard of Clinical Practice“, ERN for "European Reference Network“). There is also an introductory version on RMS available in German. In addition, European guidelines for surgery, radiotherapy, pathology and radiology exist.

There are now also European and international consensus recommendations for the many individual tumour types (entities) of non-rhabdomyosarcoma soft tissue sarcomas (NRSTS), which have replaced those of the earlier guidelines issued by the Cooperative Soft Tissue Sarcoma Study Group (CWS Guidance). 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 are accessible on the GPOH-STS homepage as well.

Please see here the ERN guideline / German-language GPOH guideline for rhabdomyosarcomas.

ESCP/ERN Guideline for RMS (english) (1.9 MB)

ESCP/ERN Guideline for NRSTS (english) (1.5 MB)

Trial FaR-RMS

The study FaR-RMS is a phase-overarching, international, multicentre study for children, adolescents and adults with newly diagnosed or relapsed rhabdomyosarcoma (RMS).

This trial has been opened on March 4th, 2025. It deals with phase I research questions regarding new drugs, and – within the framework of a multiarm, multistep phase III study – also tests new treatment options with the goal to improve patients’ prognosis. The phase III study includes the introduction of new therapy schemes for patients with high-risk or very high-risk disease or with relapse, respectively, the extension of maintenance therapy (for patients with highest risk), as well as the optimisation of local tumour control by radiotherapy for patients with very high, high and standard risk. The questions are being addressed by patient randomisation‎; in other words, patients are randomly assigned to different treatment groups (depending on the research question).

Over a time period of seven years, at least 840 patients with a new diagnosis and at least 260 patients with recurrent RMS are planned to be recruited. Numerous paediatric oncology centres throughout Europe as well as outside Europe participate in this trial. The national study centre is located at the University Children’s Hospital in Tübingen, Germany, under the direction of Prof. Dr. med. Monika Sparber-Sauer .

For further information on the trial FaR-RMS, please see here.

Tumour bank / Biobank STS 2.0-BIO

In 1992, a tumour bank was established in the CWS study centre in Stuttgart. It was a central storage for samples from patients with soft tissue sarcomas and with rare soft tissue tumours. The goal was to test those samples for molecular‎ markers thereby enabling more precise diagnostic reasoning. Analyses of the association between different patterns of molecular markers and clinical courses were supposed to establish the prognostic relevance of those markers in order to offer patients more individualized treatment in the future.

Important note

By the end of 2024, the new biobank STS2.0-Bio for soft tissue sarcomas and tumours was opened in the framework of the registry SoTiSaR 2.0-NIS. It collects and stores the biological samples of all children, adolescents and young adults with newly diagnosed soft tissue tumours (rhabdomyosarcoma, non-rhabdomyosarcoma-like soft tissue sarcomas and other soft tissue tumours).

The samples include tissue-/tumour samples, body fluids (blood, cerebrovascular fluid) or bone marrow samples that were obtained routinely during diagnostic testing and therapy. Remaining biological material that is not required any longer may be used for research after informed consent of the families, in order to improve prevention, diagnosis and treatment in the future.

The goal of the new biobank is, among others, to obtain comprehensive information on the molecular‎ background and the incidence of different types of soft tissue tumours and also to identify new molecular markers (risk/prognostic factors‎) for the development of new targeted treatment options. The biobank is currently located in the GPOH-STS Tumour Bank at the treatment centre in Stuttgart. Longterm, once a project is completed, samples are planned to be stored in the Unified Biobank Hannover at the MHH Hannover.

You will find further information on the biobank STS 2.0-BIO here.

GPOH-STS Study Centre (formerly CWS Study Centre)

Chair: Prof. Dr. Monika Sparber-Sauer (Stuttgart Olgahospital; Tübingen University Hospital), Prof. Dr. Martin Ebinger (Tübingen University Hospital)