A registry for soft tissue sarcoma and other soft tissue tumours in children, adolescents, and young adults: CWS-SoTiSaR
автор: CWS-Studygroup Germany, Последнее изменение: 2015/06/11 https://kinderkrebsinfo.de/doi/e78630
A registry for soft tissue sarcoma and other soft tissue tumours in children, adolescents, and young adults: CWS-SoTiSaR | A registry for soft tissue sarcoma and other soft tissue tumours in children, adolescents, and young adults |
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Формы рака | children, adolescents, and young adults with soft tissue sarcomas and tumours :
Rhabdomyosarcoma: embryonal rhabdomyosarcoma, alveolar rhabdomyosarcoma, rhabdomyosarkoma of other subtypes (not otherwise specified, NOS)
„RMS-like“-tumours: extraosseous Ewing’s Sarcoma, peripheral primitive neuroectodermal tumour, synovial sarcoma, undifferentiated sarcoma
"Non-RMS- like"-tumours: Angiomatoid fibrous histiocytoma, Alveolar soft part sarcoma, Clear cell sarcoma, Desmoplastic small and round cell tumour, Extraskeletal chondrosarcoma, Epitheloid sarcoma, embryonal sarcoma of the liver (should be treatetd as RMS), Endometrial stromal sarcoma, Congenital (infantile) fibrosarcoma, Fibrosarcoma, Extraosseous Giant cell tumour, Hamartoma, Inflammatory myofibroblastic tumour or inflammatory myofibroblastic sarcoma, Low grade fibromyxoid sarcoma, Leiomyosarcoma, Liposarcoma, Malignant fibrous histiocytoma (MFH), Myofibroblastic sarcoma, Malignant mesenchymoma, Malignant peripheral nerve sheath tumour (incl. eurofibrosarcoma& malig. schwannoma), Malignant rhabdoid tumour, Myxofibrosarcoma, Plexiform fibrohistiocytic tumour, Pigmented neuroectodermal tumour of childhood , Vascular sarcoma, such as Hemangioendothelioma, Hemangiopericytoma, Angiosarcoma Other soft tissue tumours: Chordoma, Dermatofibrosarcoma protuberans, Myo-/ Fibromatoses including Juvenile nasopharyngeal angiofibroma (JNF), Gastrointestinal stromal tumour, Lipoblastoma, Pleuropulmonary blastoma |
Вид исследования | Prospective, european, multicentre Registry |
Цель исследования |
The establishment of the registry will ensure that epidemiological and clinical information about chil-dren, adolescents and young adults ≤21 yrs of age with different types of soft tissue tumours including extremely rare histiotypes (e.g. non-rhabdomyosarcomatous soft tissue sarcoma) and non malignant types (e.g. fibromatosis). The registry is the backbone project of the CWS Study group that will ensure an adequate data base for further clinical and laboratory research. By the means of data collection and validation, the CWS Study group can assess the quality of treatment and provide an advisory service. The registry will constitute a basis for innovative clinical phase-I, -II and -III trials prepared in coopera-tion with the European paediatric Soft Tissue sarcoma Group (EpSSG) and the DGOH/AIO for se-lected groups of patients (i.e. high risk RMS, primary resected synovial sarcoma or “adult type” soft tissue sarcoma). The feasibility of any cooperation however depends on the existence of a registry for standardised treated patients which encompasses all histiotypes and risk groups of STS. The registry will also provide a clinical data base for a sarcoma tissue repository and biological studies. The ability to correlate outcomes of prognosis with biological markers and treatment is critical. Centrally coordi-nated network will facilitate multidisciplinary research and data sharing. The resulting system can be a model for comprehensive research studying other rare diseases.
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Кого берут в протокол |
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Status | Beginn: 01.07.2009 |
Руководитель протокола | Prof. Dr. med. Ewa Koscielniak, Prof. Dr. med. Thomas Klingebiel |
cws@klinikum-stuttgart.de | |
URL | http://www.cws.olgahospital-stuttgart.de |
С кем можно связаться |
Coordination CWS AustriaProf. Dr. med. Ruth Ladenstein St. Anna-Kinderspital Children´s Cancer Research Institute (CCRI) Kinderspitalgasse 6 1090 Wien Telefon +43 (1) 40470 4750 Fax +43 (1) 40470 7430 ruth.ladenstein@ccri.at CWS PolandProf. Dr. Bernarda Kazanowska Wroclaw Medical Universtity Department of Pediatric Hematology/Oncology and BMT, Supraregional Center of Pediatric Oncology "Cape of Hope" 213 Borowska St. 50-556 Wroclaw Telefon +48 (71) 7332840 Fax +48 (71) 7332709 b.kazanowska@mypost.pl CWS SwedenProf. Dr. med. Gustaf Ljungman Children´s University Hospital Department of Pediatric Hematology and Oncology S-751-85 Uppsala Telefon +46 (18) 611-5586 Fax +46 (18) 50-0949 gustaf.ljungman@akademiska.se CWS SwizzerlandFelix Niggli Kinderspital Zürich - Eleonorenstiftung Klinik für Onkologie Steinwiesstr. 75 CH-8032 Zürich Telefon +41 (44) 266 7823 Fax +41 (44) 266 7834 felix.niggli@kispi.uzch.ch |
Участники исследования | CWS Studiengruppe in Deutschland, Österreich, Polen, Schweden, Schweiz |
Кто финансирует | The Kinderkrebsstiftung supports the Registry SoTiSaR and the CWS-2007 HR Trial. The Förderkreis Krebskranke Kinder Stuttgart e.V. supports the equipment of the coordinating centre. |