COSS Registry

The registry's aim is to prospectively record socio-demographic and clinical-diagnostic data as well as data on the course of the disease, its treatment and treatment outcome of included patients with osteosarcoma or other defined bone sarcomas on the long term. The COSS registry's objectives are based on the objectives of the epidemiological and clinical state cancer registries. Furthermore, the COSS registry has the task to continuously process data on the occurrence and progression of cancers including their early stages and to provide the collected data for scientific cancer research.

The registry's further objectives are:

• to obtain information on diagnosis, treatment and disease progression of osteosarcomas and other defined rare bone tumour diseases
• to gain knowledge about patient characteristics and prognosis of the disease
• to study the causes of the disease and identify (influencing) risk factors
• to expand 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
• the long-term tracking of disease progression in collaboration with specific research groups
• to illustrate the reality of care and its changes
• to use it as a recruitment framework (sampling frame) for clinical phase II, phase III or therapy optimisation studies

The COSS registry serves as a mere basis for data collection. No diagnosis, treatment or follow-up recommendations are made in the framework of this project.
Participation in the COSS registry has no influence on treatment decisions. The prescription and modalities of treatment as well as the decision to discontinue or change treatment are made solely on the basis of medical indication and only by the treating physician / treating centre.
Recommendations on how the disease should be diagnosed and treated are available in the latest versions of the ESCP Guideline and the COSS Guideline, respectively.

All patients, regardless of gender, age, tumour stage/spread or current / already completed / future study participation, with pathologically and anatomically proven diagnosis of one of the following tumours:

highly malignant osteosarcoma of any subtype: conventional, osteoblastic (incl. sclerosing), chondroblastic, fibroblastic, giant cell rich, osteoblastoma-like
epithelioid, clear cell, chondroblastoma-like, non-conventional, telangiectatic, small cell
special types: parosteal, periosteal, extraosseous
low-malignant osteosarcoma (low grade central)
other bone sarcomas: osseous undifferentiated pleomorphic sarcoma (UPS), osseous leiomyosarcoma, osseous dedifferentiated chondrosarcoma, osseous mesenchymal chondrosarcoma, osseous fibrosarcoma, osseous angiosarcoma

The patients are registered by clinics or treatment centres based in Germany.