iEwing-Register

Objective: Collection of long-term follow-up data that goes beyond clinical trials Collection of data from patients receiving standard treatment if no current clinical trial is available Collection of data from patients who do not fulfil the criteria for clinical trials Therapy/study arms: The International Euro Ewing Registry is a multinational Ewing sarcoma (EwS) registry. It includes all newly diagnosed patients with localised or metastatic EwS who cannot be included in ongoing clinical trials. Patients from clinical trials can also 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’. In contrast to the clinical trials, there is no age limit. Biomaterial from registry participants is collected in the GPOH-CESS biobank for accompanying studies, as there is a great need for research into genetic diagnostic and therapeutic approaches. The registry does not provide a treatment plan. If no clinical trial is available, patients are treated according to the standard treatment.

{ "short_title": "iEwing-Register", "data_mode": "900", "data_mode_number": "000002461", "official_title": "Internationales Euro Ewing-Register", "accrual_state": "stoppedTemporarily", "therapeutic_value": "nonTherapeutic", "therapieansatz_value": null, "therapieintervention_value": null, "therapielinie_value": null, "ctgov_number": null, "eudract_number": null, "general_contact_email": "Kik-dokuteam-hs65@ukdd.de", "general_contact_phone": "+49 351-4585035", "hauptpruefer_dd_name": "Dr. med. Judith Lohse", "description_laie_de": "Ziel:\r\nErfassung von Langzeit-Follow-up Daten, die \u00fcber klinische Studien hinausgehen\r\nErfassung der Daten von Patienten, die eine Standardbehandlung erhalten, wenn keine aktuelle klinische Studie vorliegt\r\nErfassung von Daten der Patienten, welche die Kriterien f\u00fcr klinische Studien nicht erf\u00fcllen\r\n\r\nTherapie/ Studienarme:\r\nDas Internationale Euro Ewing-Register ist ein multinational gef\u00fchrtes Ewing-Sarkom-(EwS-)Register. Es schlie\u00dft alle neu diagnostizierten Patienten mit lokalisiertem oder metastasiertem EwS ein, die nicht in laufende klinische Studien eingeschlossen werden k\u00f6nnen. Ebenso k\u00f6nnen Patienten aus klinischen Studien nach deren Abschluss zum Langzeit Follow-up in das Register eingeschlossen werden. Das Register ist auch offen f\u00fcr Patienten mit sogenannten \u201eatypischen EwS\u201c oder \u201eEwing-\u00e4hnlichen Sarkomen\u201c. Es gibt, anders als bei den klinischen Studien, keine Altersbegrenzung. Es wird Biomaterial der Registerteilnehmer in der GPOH-CESS-Biobank f\u00fcr Begleitstudien gesammelt, da ein hoher Forschungsbedarf zu genetisch bedingten Diagnose- und Therapieans\u00e4tzen besteht.\r\nDas Register stellt keinen Behandlungsplan zur Verf\u00fcgung. Wenn keine klinische Studie vorliegt, werden die Patienten nach der Standardbehandlung behandelt.", "description_laie_en": null, "description_expert_de": null, "description_expert_en": "Objective:\r\nCollection of long-term follow-up data that goes beyond clinical trials\r\nCollection of data from patients receiving standard treatment if no current clinical trial is available\r\nCollection of data from patients who do not fulfil the criteria for clinical trials\r\n\r\nTherapy/study arms:\r\nThe International Euro Ewing Registry is a multinational Ewing sarcoma (EwS) registry. It includes all newly diagnosed patients with localised or metastatic EwS who cannot be included in ongoing clinical trials. Patients from clinical trials can also be included in the registry after their completion for long-term follow-up. The registry is also open to patients with so-called \u2018atypical EwS\u2019 or \u2018Ewing-like sarcomas\u2019. In contrast to the clinical trials, there is no age limit. Biomaterial from registry participants is collected in the GPOH-CESS biobank for accompanying studies, as there is a great need for research into genetic diagnostic and therapeutic approaches.\r\nThe registry does not provide a treatment plan. If no clinical trial is available, patients are treated according to the standard treatment.", "rechtsgrundlage_value": "BO", "phase_amg_value": null, "main_cat_id": 14, "sub_cat_id": 63 }

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