Sarcomas are rare mesenchymal tumors that can arise from connective and supporting tissue, muscle, bone and cartilage and can occur anywhere in the body. They are characterized by a great histological diversity and can have a very variable clinical course. While some tumor forms can grow aggressively and form metastases, others show a less severe development. Although certain sarcomas occur more frequently at a young age, patients of all ages are affected. All these circumstances contribute to the complexity of the disease and make it equally difficult to conduct clinical trials and basic research. 

The understanding of sarcoma and the treatment of sarcoma patients has improved significantly in recent decades, with the integration of multidisciplinary treatment and molecular diagnostics being the most important achievements in clinical practice. However, physicians caring for sarcoma patients are still confronted with a variety of clinical scenarios and regularly have to make decisions based on sparse or even missing data. Even if the experience available at large sarcoma centers in the treatment of sarcoma patients can partially compensate for the lack of objective evidence, this experience also has its limits, especially in extremely rare diseases.

Sarcomas are rare mesenchymal tumors that can arise from connective and supporting tissue, muscle, bone and cartilage and can occur anywhere in the body. They are characterized by a great histological diversity and can have a very variable clinical course. While some tumor forms can grow aggressively and form metastases, others show a less severe development. Although certain sarcomas occur more frequently at a young age, patients of all ages are affected. All these circumstances contribute to the complexity of the disease and make it equally difficult to conduct clinical trials and basic research. 

The understanding of sarcoma and the treatment of sarcoma patients has improved significantly in recent decades, with the integration of multidisciplinary treatment and molecular diagnostics being the most important achievements in clinical practice. However, physicians caring for sarcoma patients are still confronted with a variety of clinical scenarios and regularly have to make decisions based on sparse or even missing data. Even if the experience available at large sarcoma centers in the treatment of sarcoma patients can partially compensate for the lack of objective evidence, this experience also has its limits, especially in extremely rare diseases.

The aim of SarcBOP is to create a comprehensive database that collects, integrates, and analyzes all important demographic, molecular, clinical, pathological, and radiological treatment information on sarcomas. Additionally, patient-reported outcome questionnaires (PROs) are sent to the patient every six months to assess and document the participants' perceived health status. These questionnaires (PROs) are regularly provided either on paper or electronically (see -> Electronic Data Collection with MyEDC).

These include:

• QLQ-C30 - Quality of Life Questionnaire
• FACT-Cog - Functional Assessment
• PHQ-4 - Measurement of depression and anxiety
• PSQI - Pittsburgh Sleep Quality Questionnaire
• QLQ-FA12 - Assessment of physical, cognitive and emotional aspects of cancer-related fatigue
• Socio-demographic data

According to the affected body region:

• DASH - Impairment of the arm and shoulder
• EFAS - European Foot and Ankle Society
• OKS - Oxford Knee Score Function and Pain Questionnaire After Knee Joint Replacement Surgery
• MSTS - Musculoskeletal Tumor Society Score
• ODI - Oswestry Disability Questionnaire for back pain after spinal surgery
• OHS - Oxford Hip Score Function and Pain Questionnaire After Hip Replacement Surgery

As part of the research project PROSa+ (Ethics Approval: SR+BO-EK-452112024), funded by the German Cancer Aid within the priority program “Long-Term Cancer Survivors – Data Collection and Analysis,” additional one-time questionnaires may be distributed to SarcBOP patients who meet the following criteria, provided they have given their consent:

• „Adult sarcoma survivors without active disease or living with a chronic condition ≥ 5 years after diagnosis.“

The additional one-time questionnaires within PROSa+ include:

• EORTC QLQ-SURV100 – Survivorship (Quality of Life)
• GSLTPAQ – The Godin-Shephard Questionnaire on Physical Activity in Leisure Time
• AUDIT-C – Test for the Identification of Alcohol Misuse
• EORTC PATSAT-C33 – Satisfaction with Cancer Treatment
• SSUK-8 – Social Support in Illness
• ASKU – General Self-Efficacy
• Questions on Tobacco Use
• Assessment of Unmet Needs

The data collected in PROSa+ provides insights into the significant impacts of the disease on the daily lives of the affected individuals and allows conclusions to be drawn about their physical and mental state before, during, and after treatment.

To promote synergies between research consortia (e.g., SarcBOP and PROSa+), we make patient questionnaires (PROs) from SarcBOP available for scientific evaluation within PROSa+, provided that patients in SarcBOP have explicitly agreed to the use of their data beyond SarcBOP.

In addition, tissue and blood samples are continuously collected in SarcBOP and stored in the biobank; the benefits of this systematic storage of tissue and blood samples are manifold:

• frozen tissue (“fresh frozen”), can be used for comprehensive molecular analyses such as whole genome and RNA sequencing as well as protein and DNA methylation analyses. Immediate storage of samples in a frozen state preserves their biological properties and molecular structures, enabling precise analyses and allowing samples to be removed at any time for various analyses if required.
• vital tissue (living cells and intact tissue structures), which is crucial for a deeper understanding of biological processes and can be used above all for individual drug testing.
• Blood samples (“liquid biopsies”) are a method that can be used for the non-invasive examination of tumors. They make it possible to extract genetic and molecular data from blood and can support the early detection of tumors as well as tumor monitoring during the course of the disease. In addition, they offer the possibility of detailed genetic analyses for targeted therapy adaptation.

SarcBOP is closely linked to the clinical activities of the Sarcoma Center Heidelberg (one of the largest centers for soft tissue and bone sarcomas in Germany), the molecular diagnostics program (DKFZ/NCT/DKTK MASTER program, NCT05852522) and our broad study program (NCT04758325, NCT06456359, NCT04625907). 

SarcBOP was launched on June 19, 2019 with a positive ethics vote from the Heidelberg Ethics Committee in order to promote a translational and interdisciplinary approach to sarcoma research. Just one month later, on July 23, 2019, the first informed consent form was signed by a participant at the NCT and shortly afterwards, on August 9, 2019, the first quality of life questionnaire was completed. The first blood sample collection as part of SarcBOP followed in February 2020. Thanks to the continuous commitment and dedication of the clinicians and researchers involved, SarcBOP was gradually developed further and the integration of the Orthopaedic Clinic in Schlierbach in January 2021 further strengthened interdisciplinary collaboration. 

In September 2021, further questionnaires on muscle and joint function were submitted to the Heidelberg Ethics Committee. Auf die erste Entnahme einer Gewebeprobe im Rahmen von HEROES-AYA am 24.11.2022 folgte im The first collection of a tissue sample as part of HEROES-AYA on November 24, 2022 was followed by a third assessment by the Heidelberg Ethics Committee in June 2023. The age of the inclusion criterion was lowered from 18 to 12 years. Since then, underage patients can also participate in SarcBOP. 

A further evaluation by the Heidelberg Ethics Committee is planned for the first quarter of 2025 with the aim of also including 0-12-year-olds in SarcBOP.

SarcBOP is now part of sarcoma research and the HEROES-AYA research consortium as part of the Decade Against Cancer. SarcBOP is also part of the PROSa study (PROSa+) funded by German Cancer Aid.

SarcBOP also plays an important role in the certification of the Sarcoma Center Heidelberg. 

To date, more than 2050 patients have been enrolled in SarcBOP, more than 2000 blood samples and more than 1275 tissue samples have been collected, and approximately 6250 PROs have been completed by participants (Figures from 05.03.2025).

Regardless of whether you are a patient, doctor or researcher - if you are interested in working with us to advance the research and treatment of sarcoma patients, we look forward to hearing from you at SarcBOP(at)nct-heidelberg.de. 

Checklist genetic risk

Checklist for the structured recording of indications of a genetic predisposition with a diagnosis of soft tissue or bone tumor and Age of onset ≥ 18 years