iEwingRegistry

Author:  Julia Dobke, erstellt am 2022/03/23, Last modification:  2022/04/06

iEwingRegistry

International Euro Ewing Registry

Disease

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. 

Type

Internationl, multicentre registry

Problem / Objectives
  • 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
Therapy / Study arms

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.

Inclusion Criteria

Diagnosis: Primary diagnosed and histologically confirmed, localised or metastatic Ewing sarcoma or Ewing-like sarcoma of bone or soft tissue..

Recruitment unlimited, expected 150 per year
Status Start 2020 for 30 years
Principal Investigator Prof. Dr. med. U.Dierksen
E-Mail 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 uta.dirksen@uk-essen.de

Participants Australien, Belgien, Deutschland, Griechenland, Finnland, Litauen, Niederlande, Neuseeland, Österreich, Polen, Portugal, Schweden, Schweiz, Slowakei, Slowenien, Tschechien, Ungarn und Zypern.