Sarcomas are rare mesenchymal malignancies arising from connective tissues as well as bones and cartilage and are characterized by remarkable histologic diversity and variable clinical course, ranging from indolent to highly invasive and metastatic. The occurrence of sarcomas in every part of the body, as well as in every age group, adds to the complexity of the disease, which in turn, is a considerable obstacle to conducting clinical trials and basic research. The understanding of sarcomas and treatment of patients with sarcomas have substantially improved in the past decades, with the integration of multi-disciplinary care and molecular diagnostic tools surely being the most relevant achievements in clinical practice. However, physicians caring for sarcoma patients are still dealing with a nearly infinite number of clinical scenarios. They routinely must make decisions based on sparse evidence or no evidence at all. Although the experience of high-volume sarcoma centers may compensate partly for a lack of evidence, experience also has limits on ultra-rare diseases.
Sarcomas – Rare, difficult to treat, and challenging to research
Why another registry study?
Registry studies have proven useful in numerous clinical settings. Especially in rare diseases, a registry study may generate evidence that cannot be obtained from randomized trials by collecting data from clinical routine to address a variety of questions. Most registry studies, however, focus on specific questions or distinct clinical situations, e.g., the collection of clinical data in a defined subgroup of patients or the molecular investigation of tumor tissue specimens without corresponding clinical data, and thus neglect information that lies outside the primary scope of the respective research project but may be relevant for a better global understanding of the disease.
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.
Who is SarcBOP?
As we strongly believe in a translational and interdisciplinary approach to cancer medicine, SarcBOP is a collaborative effort of everyone involved in sarcoma medicine at the Heidelberg campus – clinicians and researchers from Heidelberg University Hospital, NCT, and DKFZ as well as patients. A list of all SarcBOP investigators and participating institutions can be found at the bottom of this page.
Support SarcBOP! Join us!
Regardless if you are a patient, a physician, or a researcher: if you want to join us in improving research and care for sarcoma patients, please contact us at sarcbop@nct-heidelberg.de!
List of SarcBOP Collaborators
Dr. Leonidas Apostolidis
Department of Medical Oncology
National Center for Tumor Diseases
Dr. Nicholas Beckmann
Department of Orthopedics
Heidelberg University Hospital
Prof. Dr. David Bonekamp
Division of Radiology
German Cancer Research Center
Dr. Bettina Beuthien-Baumann
Division of Radiology
German Cancer Research Center
Dipl.-Inform. Med. Nina Bougatf
NCT Cancer Registry
National Center for Tumor Diseases
Dr. Elena Bulut
Department of Thoracic Surgery
Heidelberg University Hospital
Dr. Priya Chudasama
Emmy Noether Junior Research Group Precision Sarcoma Research
German Cancer Research Center
Dr. Christopher Draenkow
Department of Thoracic Surgery
Heidelberg University Hospital
Prof. Dr. Gerlinde Egerer
Department of Internal Medicine V
Heidelberg University Hospital
Prof. Dr. Dr. M. Engel
Department of Oral and Maxillofacial Surgery
Heidelberg University Hospital
Prof. Dr. Stefan Fröhling
Department of Translational Medical Oncology
National Center for Tumor Diseases
Editha Gutzmann
NCT Trial Center
National Center for Tumor Diseases
PD Dr. Stefan Gröschel
Department of Internal Medicine V
Heidelberg University Hospital
Prof. Dr. Georg Martin Haag
Department of Medical Oncology
National Center for Tumor Diseases
Prof. Dr. Leila Harhaus
Department of Plastic Surgery
Heidelberg University Hospital
Dr. Christoph E. Heilig
Department of Translational Medical Oncology
National Center for Tumor Diseases
Prof. Dr. Christoph Hirche
Department of Plastic Surgery
Heidelberg University Hospital
Prof. Dr. Dr. J. Hoffmann
Department of Oral and Maxillofacial Surgery
Heidelberg University Hospital
Sabine Holzmeier
Division of Physical Activity, Prevention and Cancer
German Cancer Research Center
Steffen Hopf
NCT Trial Center
National Center for Tumor Diseases
Dr. Romy Kirsten
Liquid Biobank
National Center for Tumor Diseases
Dr. Lucian Le Cornet
NCT Trial Center
National Center for Tumor Diseases
Prof. Dr. Burkhard Lehner
Department of Orthopedics
Heidelberg University Hospital
Dr. Matthias Mattke
Department of Radiooncology
Heidelberg University Hospital
Prof. Dr. Gunhild Mechtersheimer
Institute of Pathology
Heidelberg University Hospital
Prof. Dr. Georg Omlor
Department of Orthopedics
Heidelberg University Hospital
Prof. Dr. Richard F. Schlenk
NCT Trial Center
National Center for Tumor Diseases
Dr. Martina Schmidt
Division of Physical Activity, Prevention and Cancer
German Cancer Research Center
Prof. Dr. Martin Schneider
Department of Surgery
Heidelberg University Hospital
Dr. Oliver Sedlaczek
Department of Radiology
Heidelberg University Hospital
Prof. Dr. Karen Steindorf
Division of Physical Activity, Prevention and Cancer
German Cancer Research Center
Prof. Dr. Albrecht Stenzinger
Institute of Pathology
Heidelberg University Hospital
Dr. Veronica Teleanu
Department of Translational Medical Oncology
National Center for Tumor Diseases
Prof. Dr. Frank Ückert
Division of Medical Informatics for Translational Oncology
German Cancer Research Center
Prof. Dr. Matthias Uhl
Department of Radiooncology
Heidelberg University Hospital
Dr. Franziska Willis
Department of Surgery
Heidelberg University Hospital
Prof. Dr. Hauke Winter
Department of Thoracic Surgery
Heidelberg University Hospital