iEwing Registry

yazar:  Julia Dobke, Last modification: 2023/01/20 https://kinderkrebsinfo.de/doi/e243567

iEwing Registry

International Euro Ewing Registry
hastalık Female and male patients of any age with localised or metastatic primary diagnosed Ewing sarcoma (EwS) or so called Ewing-like sarcoma and small blue round cell sarcoma with other, rare translocation and adult patients with desmoplastic small round cell tumours. This group of tumours is summarized under the term Ewing sarcoma.
Nitelik Internationl, multicentre registry
Soru
  • To analyze long-term follow-up data that exceeds current clinical trials.
  • To collect data from patients receiving standard treatment when no current clinical trial is available, or from patients who do not fulfil clinical study criteria.
  • To collect biomaterial for ancillary studies in the GPOH-CESS Biobank
Terapi

The International Euro Ewing Registry is a multinational Ewing Sarcoma (EwS) registry. It includes all newly diagnosed patients with localized or metastatic EwS who cannot be included in ongoing clinical trials. Likewise, patients from clinical trials can be included in the registry after their completion for long-term follow-up. The registry is also open to patients with so-called "atypical EwS" or "Ewing-like sarcomas". Unlike the clinical studies, there is no age limit. Biomaterial from the registry participants is collected in the GPOH-CESS biobank for accompanying studies, as there is a high need for research on genetically determined diagnostic and therapeutic approaches.
The registry does not provide a treatment plan. If no clinical study is available, patients are treated according to the standard-of-care treatment.
dahil etme kriterleri

Diagnosis: Primary diagnosed and histologically confirmed, localised or metastatic Ewing sarcoma or Ewing-like sarcoma of bone or soft tissue..
Patientenanzahl unlimited, expected 150 per year
Status Start: 2020 for 30 years
çalışma lideri Prof. Dr. med. U.Dierksen
E-Mail registry-ewing@uk-essen.de
Contact

Co-Ordinating Investigator

Prof. Dr. med. Uta Dirksen Universitätsklinikum Essen, Zentrum für Kinder- und Jugendmedizin Kinderheilkunde III, Internationale EWING Studienzentrale Hufelandstr. 55 45147 Essen Telefon +49 (201) 723 8084 Fax +49 (201) 723 6298

Katılımcı Australia, Belgium, Germany, Greece, Finlandia, Litauen, Netherlands, New Zealand, Austria, Poland, Portugal, Sweden, Switzerland, Slovakia, Slovenia, Czechia, Hungary and Cyprus.