Sarcomas – Rare, difficult to treat, and challenging to research
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.
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(at)nct-heidelberg.de!
Scientific Team
PD Dr. Leonidas Apostolidis
National Center for Tumor Diseases (NCT)
Department of Medical Oncology
Dr. Alexander Brobeil
Heidelberg University Hospital (UKHD)
NCT Tissue Bank
Prof. Dr. Gerlinde Egerer
National Center for Tumor Diseases (NCT)
Department of Internal Medicine V
Prof. Dr. Stefan Fröhling
National Center for Tumor Diseases (NCT)
Department of Translational Medical Oncology
Dr. Andreas Geisbüsch
Heidelberg University Hospital (UKHD)
Department of Orthopedics, Section Orthopaedic Oncology
Prof. Dr. Georg Martin Haag
National Center for Tumor Diseases (NCT)
Department of Translational Medical Oncology
Dr. Christoph E. Heilig
National Center for Tumor Diseases (NCT)
Department of Translational Medical Oncology
Prof. Dr. Burkhard Lehner
Heidelberg University Hospital (UKHD)
Department of Orthopedics, Section Orthopaedic Oncology
Prof. Dr. Gunhild Mechtersheimer
Heidelberg University Hospital (UKHD)
Institute of Pathology
Prof. Dr. Kristian W. Pajtler
Heidelberg University Hospital (UKHD)
KITZ- Hopp Children's Cancer Center Heidelberg
Prof. Dr. Richard F. Schlenk
National Center for Tumor Diseases (NCT)
NCT Trial Center and Department of Medical Oncology
Dr. Martina Schmidt
German Cancer Research Center (DKFZ)
Department of Physical Activity, Prevention and Cancer
Dr. Katharina Seidensaal
Heidelberg University Hospital (UKHD)
Department of Radiation Oncology
Prof. Dr. Karen Steindorf
German Cancer Research Center (DKFZ)
Department of Physical Activity, Prevention and Cancer
PD Dr. Cornelis van Tilburg
Heidelberg University Hospital (UKHD)
KITZ- Hopp Children's Cancer Center Heidelberg
Prof. Dr. Olaf Witt
Heidelberg University Hospital (UKHD)
Zentrum für Kinder- und Jugendmedizin
Research Team NCT
Sebastian Bender
National Center for Tumor Diseases (NCT)
NCT Trial Center
Thorsten Dirr
National Center for Tumor Diseases (NCT)
NCT Trial Center
Michaela Glocker
National Center for Tumor Diseases (NCT)
NCT Trial Center
Editha Gnutzmann
National Center for Tumor Diseases (NCT)
NCT Trial Center
Anu Mathews
National Center for Tumor Diseases (NCT)
NCT Trial Center
Deric Njeik
National Center for Tumor Diseases (NCT)
NCT Trial Center
Luis Reich
National Center for Tumor Diseases (NCT)
NCT Trial Center
Luis Scheck
National Center for Tumor Diseases (NCT)
NCT Trial Center
Research Team NCT Liquid Biobank
Birgit Besenbeck
National Center for Tumor Diseases (NCT)
Cell and Liquid Biobank (NCT CLB)
Dr. Nadine Volk
National Center for Tumor Diseases (NCT)
Cell and Liquid Biobank (NCT CLB)
Research Team Orthopedics
Kamelia Soleiman-Masihi
Heidelberg University Hospital (UKHD)
Department of Orthopedics
Anja Speicher
Heidelberg University Hospital (UKHD)
Department of Orthopedics
Research Team Visceral Surgery
Birgit Erni
Heidelberg University Hospital (UKHD)
Department of Surgery
Oriel Mangadze
Heidelberg University Hospital (UKHD)
Department of Surgery
Dr. Frank Pianka
Heidelberg University Hospital (UKHD)
Department of Surgery
Research Team Radiation Oncology
Yvonne Frank
Heidelberg University Hospital (UKHD)
Department of Radiation Oncology
Dr. Cornelia Jäkel
Heidelberg University Hospital (UKHD)
Department of Radiation Oncology
Dr. Adriane Lentz-Hommertgen
Heidelberg University Hospital (UKHD)
Department of Radiation Oncology
Verena Rimmler
Heidelberg University Hospital (UKHD)
Department of Radiation Oncology
Anna Smith
Heidelberg University Hospital (UKHD)
Department of Radiation Oncology
Research Team DKFZ
Sabine Holzmeier
German Cancer Research Center (DKFZ)
Department of Physical Activity, Prevention and Cancer