COSS-Register

The registry is intended to prospectively record socio-demographic and clinical-diagnostic data as well as the course of the disease, treatment and treatment outcome of included patients with osteosarcoma or other defined bone sarcomas over the long-term. The objectives of the COSS registry are based on the objectives of the epidemiological and clinical state cancer registries. Furthermore, the COSS registry has the task of continuously processing data on the occurrence and progression of cancers, including their early stages, and making the collected data available for scientific cancer research. The other objectives of the registry are Obtaining information on diagnosis, treatment and disease progression of osteosarcomas and other defined rare bone tumour diseases Gaining knowledge about patient characteristics and prognosis of the disease Research into the causes of the disease and identification of (influencing) risk factors Expansion of the database for clinical and translational research on these entities as a platform for information transfer and further development of a network for interdisciplinary collaboration Long-term tracking of disease progression in collaboration with specific research groups Mapping the reality of care and its changes Use as a recruitment framework (sampling frame) for clinical phase II, phase III or therapy optimisation studies.

{ "short_title": "COSS-Register", "data_mode": "900", "data_mode_number": "000002450", "official_title": "Register f\u00fcr Kinder, Jugendliche und Erwachsene mit Osteosarkomen und biologisch verwandten Knochensarkomen (COSS-Register)", "accrual_state": "running", "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": "Das Register soll soziodemografische und klinisch-diagnostische Daten sowie den Krankheitsverlauf, die Behandlung und das Behandlungsergebnis von eingeschlossenen Patienten mit Osteosarkomen oder anderen definierten Knochensarkomen im Langzeitverlauf prospektiv erfassen. Die Zielsetzung des COSS-Registers orientiert sich hierbei an der Zielsetzung der epidemiologischen und klinischen Landeskrebsregister.\r\nDes Weiteren hat das COSS-Register die Aufgabe, fortlaufend Daten \u00fcber das Auftreten und den Verlauf von Krebserkrankungen einschlie\u00dflich ihrer Fr\u00fchstadien zu verarbeiten und die gesammelten Daten f\u00fcr die wissenschaftliche Krebsforschung zur Verf\u00fcgung zu stellen.\r\n\r\nDie weiteren Zielsetzungen des Registers sind:\r\n\r\nGewinnung von Informationen \u00fcber Diagnose, Behandlung und Krankheitsverlauf zu Osteosarkomen und anderen definierten seltenen Knochentumorerkrankungen\r\nErkenntnisgewinn \u00fcber Patientencharakteristika und Prognose der Erkrankung\r\nErforschung von Krankheitsursachen sowie Identifizierung von (beeinflussenden) Risikofaktoren\r\nErweiterung der Datenbasis f\u00fcr klinische und translationale Forschung zu diesen Entit\u00e4ten als Plattform zur Informationsvermittlung sowie Weiterentwicklung eines Netzwerkes zur interdisziplin\u00e4ren Zusammenarbeit\r\nLangzeitnachverfolgung der Erkrankungsverl\u00e4ufe in Zusammenarbeit mit spezifischen Forschungsgruppen\r\nAbbildung der Versorgungsrealit\u00e4t und ihrer \u00c4nderung\r\nNutzung als Rekrutierungsrahmen (Sampling-Frame) f\u00fcr klinische Phase-II-, Phase-III- oder Therapieoptimierungsstudien", "description_laie_en": null, "description_expert_de": null, "description_expert_en": "The registry is intended to prospectively record socio-demographic and clinical-diagnostic data as well as the course of the disease, treatment and treatment outcome of included patients with osteosarcoma or other defined bone sarcomas over the long-term. The objectives of the COSS registry are based on the objectives of the epidemiological and clinical state cancer registries.\r\nFurthermore, the COSS registry has the task of continuously processing data on the occurrence and progression of cancers, including their early stages, and making the collected data available for scientific cancer research.\r\n\r\nThe other objectives of the registry are\r\nObtaining information on diagnosis, treatment and disease progression of osteosarcomas and other defined rare bone tumour diseases\r\nGaining knowledge about patient characteristics and prognosis of the disease\r\nResearch into the causes of the disease and identification of (influencing) risk factors\r\nExpansion of the database for clinical and translational research on these entities as a platform for information transfer and further development of a network for interdisciplinary collaboration\r\nLong-term tracking of disease progression in collaboration with specific research groups\r\nMapping the reality of care and its changes\r\nUse as a recruitment framework (sampling frame) for clinical phase II, phase III or therapy optimisation studies.", "rechtsgrundlage_value": "BO", "phase_amg_value": null, "main_cat_id": 14, "sub_cat_id": 63 }

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