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SarcBOP - An interdisciplinary and translational registry
SarcBOP aims to establish a database that integrates every aspect possibly relevant to sarcoma treatment and research. SarcBOP thus will not be limited to specific questions or patient groups, but instead will build a comprehensive database including clinical, pathologic, and radiologic information, multi-layered molecular data, and patient-reported outcomes, combined with a dedicated biobank for tissue samples and liquid biopsies. As the study integrates seamlessly with the clinical activities of the Heidelberg Sarcoma Center, the Molecular Diagnostics Program of NCT Heidelberg, including the NCT/DKTK MASTER Program, and with the NCT Trial Center, including the PMO Clinical Trials Program, SarcBOP will generate a comprehensive and continuously growing resource for clinicians, researchers, and, finally, patients.
The following data are collected and stored:
Furthermore, biological samples are collected and processed by the Sample Processing Laboratory of the Heidelberg Center for Personalized Oncology and the NCT Biobank.
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| Measure | Description | Time Frame |
|---|---|---|
| overall survival | The length of time from the date of diagnosis disease, that patients diagnosed with are still alive | 5 years |
| overall survival | The length of time from the date of diagnosis disease, that patients diagnosed | 10 years |
| Measure | Description | Time Frame |
|---|---|---|
| progression free survival | length of time during and after treatment, that a Patient lives with the disease without getting worse | 5 years |
| Measure | Description | Time Frame |
|---|---|---|
| Core questionnaire QLQ-C30 | Standardized Quality of Life Assessment, Higher values are better | 5 years |
| Fatigue module QLQ-FA12 | Standardized Quality of Fatigue, Higher values are worse |
Inclusion Criteria:
Exclusion Criteria:
• Severe neurological or psychiatric disorder interfering with the ability to give written informed consent
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Patients with Soft-tissue and Bone Sarcoma
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Richard F. Schlenk, Prof.Dr.med | Contact | +49 6221 56 6228 | richard.schlenk@med.uni-heidelberg.de | |
| SarcBOP Team | Contact | sarcbop@nct-heidelberg.de |
| Name | Affiliation | Role |
|---|---|---|
| Richard F. Schlenk, Prof.Dr.med | National Center for Tumour Disease | Principal Investigator |
| Christoph E. Heilig, Dr. med. | National Center for Tumour Disease | Study Director |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| National Center for Tumour Diseases, University Hospital Heidelberg | Recruiting | Heidelberg | Baden-Wurttemberg | 69120 | Germany |
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| Label | URL |
|---|---|
| official website of SarcBOP | View source |
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| ID | Term |
|---|---|
| D012509 | Sarcoma |
| C535700 | Malignant mesenchymal tumor |
| D012516 | Osteosarcoma |
| D035583 | Rare Diseases |
| ID | Term |
|---|---|
| D018204 | Neoplasms, Connective and Soft Tissue |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
| D018213 | Neoplasms, Bone Tissue |
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| 5 years |
| PHQ-4 (anxiety and depression) | Standardized Quality of anxiety and depression, Higher values are worse | 5 years |
| FACT-cog (cognitive function) | Standardized Quality of cognitive function, Higher values are better | 5 years |
| DASH | Disability of the arm, shoulder and hand, lower values are better | 5 years |
| EFAS | European foot and ankle society, higher values are better | 5 years |
| OKS | Oxford knee score function and pain questionnaire after total knee replacement surgery, (TKR), higher values are better | 5 years |
| MSTS | Musculoskeletal tumor society score, higher values are better | 5 Years |
| ODI | Oswestry back pain disability questionnaire after spinal surgery, lower values are better | 5 Years |
| OHS | Oxford hip score - Function and pain questionnaire after hip replacement surgery, higher values are better | 5 years |
| PSQI | Pittsburgh Sleep Quality Index, Higher values are worse | 5 years |
| Sociodemographics | Sociodemographic data | Baseline only |
| Stefan Fröhling, Prof. Dr. |
| National Center for Tumour Disease |
| Study Director |
| D009372 | Neoplasms, Connective Tissue |
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |