This is a registry study. This means that no medicines will be tested. It only involves the collection and processing of data. In addition to hospitals in Switzerland and Germany, hospitals in Austria, Poland and Sweden are also taking part in the study. Patients with a soft tissue sarcoma who are under 21 years of age can be enrolled in the registry study.
A soft tissue sarcoma is diagnosed in only a very small number of patients (approx. 7 to 10 per year) in Switzerland. Since soft tissue sarcomas comprise more than 25 different types of cancer, it is desirable to carefully document information about all these patients who have rare cancers and to compile it in one place. This is the only way to find out about the results of therapy and the prognosis. Existing tumour samples are checked again by pathologists who specialise in soft tissue sarcomas (known as reference pathologists) to be certain that the diagnosis is correct. Centralised compilation of the data and their analysis provides information on the best way to treat soft tissue sarcomas and what affected patients can expect, e.g. what their chances of recovery are or the best way to examine them after therapy has ended in order to identify any recurrence of the disease. The main aim of this study is therefore to analyse the quality and the outcomes of treatment. In addition, the current classification of tumour types according to risk factors will be reviewed and new risk factors may be identified. The results will also create a basis for performing clinical trials in which new therapies will be tested. The compiled information will additionally be made available to researchers, doctors and patients in general.
This study is being carried out by the Cooperative Soft Tissue Sarcoma study group (CWS is the German abbreviation of this group’s name). The study group is under the patronage of the Society of Paediatric Oncologists and Haematologists (GPOH) and works on the diagnosis and therapy of children and adolescents with soft tissue sarcomas. The Swiss Paediatric Oncology Group (SPOG) is responsible for performing the study in Switzerland.
In short
- This registry study is designed to collect data (including data on diagnosis, therapy and treatment outcome) from children and adolescents with rare soft tissue tumours.
- This registry study will help us gain a deeper understanding of these diseases and, as a result, develop better treatments for the future.
- The study will give treating doctors specific treatment recommendations for the affected patients. The study will also give us a better understanding of the disease and thereby benefit future patients.
