For healthcare professionals
The physicians, nurses and other healthcare providers who treat chordoma patients play a major role in determining patient outcomes, and are critical to our efforts to advance chordoma research. This page contains information to help healthcare professionals most effectively treat chordoma, provide valuable resources to their patients, and participate in efforts to advance chordoma research.
We encourage you to register so that we can provide you with the latest information about treatment advances, clinical trials, upcoming research workshops, and resources for your patients.
Outline: Treatment | Research | Resources for your patients
Treatment
The Understanding Chordoma and Treatment pages on our website provide a good staring point for those unfamiliar with chordoma. Additionally, the following pages on our website contain information relevant for the treatment of chordoma:
- List of all clinical trials open to chordoma patients
- Summary of all published responses to systemic therapy
- List of all particle therapy centers across the world
- Therapeutic Target Dashboard highlighting the genes, proteins, and signaling pathways that may be promising targets for systemic therapy
Authoritative treatment references
- Chordoma: current concepts, management, and future directions (Lancet Oncol. 2012)
- The biological basis for the modern treatment of chordoma (J Neurooncol. 2011)
- Chordoma of the sacrum and vertebral bodies (J Am Acad Orthop Surg. 2009)
- Skull base chordomas (Otolaryngol Clin North Am. 2011)
- Current comprehensive management of cranial base chordomas (J Neurosurg. 2011)
- Systemic therapy options for unresectable and metastatic chordomas (Curr Oncol Rep. 2011)
- Proton therapy in chordoma of the base of the skull: a systematic review (Neurosurg Rev. 2009)
Research
Chordoma Foundation Biobank
Currently, scarcity of chordoma biospecimens is thwarting progress in the field. To solve this problem, the Chordoma Foundation operates an IRB-approved biobanking protocol for the collection of tumor tissue, blood and clinical information from chordoma patients across the US. Storage and distribution is performed by the Human Tissue Resource Network at The Ohio State University under contract with the Chordoma Foundation. This collection serves as a resource to the entire research community, making tissue available to qualified investigators for peer reviewed research projects.
Healthcare professionals can help by informing chordoma patients about the opportunity to participate in the biobank. We will gladly send tri-fold brochures about the biobank that you can provide to your chordoma patients or display in your clinic. Contact us to request brochures, or download a copy here.
Patients can enroll in the Biobank by calling (877) 230-0164 or emailing biobank@chordoma.org. Our Biobank team will consent the patient to participate in the Biobank and will work with your institution to procure excess tumor from surgery. We will provide collection kits and any other supplies needed to obtain frozen tissue; handle shipping and pickup logistics; and reimburse hospitals for procurement costs up to $500 per case.
Research Workshops
Our International Chordoma Research Workshops bring together a multidisciplinary group of leading chordoma physicians and scientists from around the world to share the latest discoveries about chordoma, discuss new treatment approaches, and to forge collaborations with colleagues from different disciplines and institutions. Learn more »
Relevant Professional Societies
- North American Skull Base Society
- European Skull Base Society
- World Federation of Neurosurgical Societies
- Society for Neuro-Oncology
- Connective Tissue Oncology Society
- American Society of Clinical Oncology
- European Society for Medical Oncology
- Musculoskeletal Tumor Society
- American Academy of Orthopaedic Surgeons
- Particle Therapy Co-Operative Group
Resources for your Patients
- Understanding chordoma – a lay summary of chordoma designed to inform chordoma patients
- Treatment overview – intended to help patients make informed treatment decisions
- Frequently asked questions – designed to answer many common patient questions
- Financial assistance
- Prescription assistance
- Housing
- Transportation
- Family and caregiver resources
- Support groups