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Brief Title: Primary Tumor Research and Outcomes Network
Official Title: Primary Tumor Research and Outcomes Network (PTRON) A Multicenter Prospective Registry for the Management and Outcomes of Primary Tumors of the Spine
Study ID: NCT02790983
Brief Summary: This project aims to establish a network of spine oncology centers dedicated to prospective multicenter research of patients diagnosed with a primary tumor of the spine and will include a comprehensive prospective clinical database which will serve as a shared research platform. Demographic, clinical, diagnostic, and therapeutic variables will be used to answer questions about survival and local recurrence, as well as questions about adverse events (AEs), morbidity data, and health-related quality of life (HRQOL) outcomes.
Detailed Description: Objective: To prospectively investigate variables (clinical, diagnostic, and therapeutic) in patients diagnosed with primary spinal column and cord tumors that are associated with: * survival * local recurrence * morbidity data * patient reported outcomes Outcome measures: Variables applicable to primary spinal column tumor patients which will be collected in the registry include: * Patient details * Treatment status * Details of previous treatment * Diagnosis and biopsy types * Tumor details * Oncological staging * Symptoms * Treatment details * Imaging information We aim to collect the following outcome measures: * Overall survival data * Local disease recurrence data * Morbidity data * Patient reported outcomes: * Euroquol-5D-3L, EQ-5D-Y (if applicable) * Euroquol EQ-5D VAS - Quality of Life * Neck pain numeric rating scale (NRS) * Arm pain NRS * Back pain NRS * Leg Pain NRS * SF-36 version 2 * SOSG Outcome Questionnaire (SOSGOQ) v1.0 and v2.0 * Surverys on patient expectations and satisfaction
Minimum Age:
Eligible Ages: CHILD, ADULT, OLDER_ADULT
Sex: ALL
Healthy Volunteers: No
University of California, Los Angeles, California, United States
UCSF Medical Center, San Francisco, California, United States
Johns Hopkins University School of Medicine, Baltimore, Maryland, United States
Massachusetts General Hospital, Boston, Massachusetts, United States
Mayo Clinic, Rochester, Minnesota, United States
Memorial Sloan-Kettering Cancer Center, New York, New York, United States
Memorial Sloan Kettering Cancer Center, New York, New York, United States
Rhode Island Hospital, Providence, Rhode Island, United States
The University of Texas M.D. Anderson Cancer Center, Houston, Texas, United States
University of Queensland, School of Medicine, Brisbane, , Australia
Vancouver General Hospital and the University of British Columbia, Vancouver, British Columbia, Canada
Toronto Western Hospital, Toronto, Ontario, Canada
Peking University 3rd Hospital, Beijing, Beijing, China
Universitaetsklinikum Carl Gustav Carus der Techn. Universitaet - Dresden, Dresden, , Germany
National Center for Spinal Disorders and Buda Health Center, Budapest, , Hungary
Istituto Ortopedico Rizzoli, Bologna, , Italy
IRCCS Istituto Ortopedico Galeazzi, Milano, , Italy
Kanazawa Medical University Hospital, Kanazawa, , Japan
Oxford University Hospitals, Oxford, , United Kingdom
Name: Jeremy Reynolds, MD
Affiliation: Clinical Lead for Spinal Surgery at Oxford University Hospitals
Role: PRINCIPAL_INVESTIGATOR