Primary Tumor Research and Outcome Network
a study on Spinal Cord Tumor
- at San Francisco, California and other locations
- study startedestimated completion:
Clinical, diagnostic, and therapeutic data specific for primary spinal column tumor patients will be collected and evaluated to investigate the prognostic factors which influence survival, local recurrence, adverse events, perioperative morbidity, and HRQOL in subgroups of patients diagnosed with primary spinal column tumors.
Primary Tumor Research and Outcome Network (PTRON) A Multicenter Prospective Registry for the Management of Primary Tumors of the Spine
Objective: To prospectively investigate the prognostic variables (clinical, diagnostic, and therapeutic) within subgroups of patients diagnosed with primary spinal column tumors that are associated with:
- local recurrence
- perioperative morbidity
- patient reported outcomes
Outcome measures: Variables applicable to primary spinal coumn 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
- Treatment details
- Imaging information
The investigators aim to collect the following outcome measures:
- Overall survival data
- Local disease recurrence data
- Perioperative morbidity data
Patient reported outcomes:
- 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
Spinal Cord Tumor Registry Spine Surgery Medical Oncology Radiation Oncology Neoplasms
You can join if…
- Patient diagnosed with a primary tumor of the spine who receive medical and/or surgical treatment for the tumor.
- Patient willing and able to participate in the registry and able to attend follow-up visits, according to the investigator.
- Patient capable of understanding the content of the patient information and Informed Consent Form (if consent is required by the EC/ IRB at the registry site).
- Patient who has agreed to participate in the registry by providing consent according to the applicable local law and the declaration of Helsinki.
You CAN'T join if...
- Patient diagnosed with a metastatic tumor of the spine.
- Patient diagnosed with a primary spinal cord tumor.
- UCSF Medical Center not yet accepting patients
San Francisco, California, CA 94134, United States
- Vancouver General Hospital and the University of British Columbia accepting new patients
Vancouver, British Columbia, V5Z 1M9, Canada
- The University of Texas M.D. Anderson Cancer Center not yet accepting patients
Houston, Texas, 77030, United States
- Mayo Clinic accepting new patients
Rochester, Minnesota, 55905, United States
- Univerity of Toronto not yet accepting patients
Toronto, Ontario, M5T 2S8, Canada
- Johns Hopkins University School of Medicine not yet accepting patients
Baltimore, Maryland, MD 21205, United States
- Memorial Sloan-Kettering Cancer Center not yet accepting patients
New York, New York, NY 10065, United States
- Rhode Island Hospital not yet accepting patients
Providence, Rhode Island, 02903, United States
- Oxford University Hospitals not yet accepting patients
Oxford, OX3 7HE, United Kingdom
- Kanazawa Medical University Hospital not yet accepting patients
Kanazawa, 920-8641, Japan
- Universitaetsklinikum Carl Gustav Carus der Techn. Universitaet - Dresden not yet accepting patients
Dresden, 1307, Germany
- National Center for Spinal Disorders and Buda Health Center not yet accepting patients
Budapest, 1126, Hungary
- Istituto Ortopedico Rizzoli not yet accepting patients
Bologna, 40136, Italy
- IRCCS Istituto Ortopedico Galeazzi not yet accepting patients
Milano, 20161, Italy
- University of Queensland, School of Medicine not yet accepting patients
Brisbane, 4000 QLD, Australia
- accepting new patients
- Start Date
- Completion Date
- AO Clinical Investigation and Documentation
- Study Type
- Observational [Patient Registry]
- Last Updated
- November 1, 2016
Please contact me about this study
We will not share your information with anyone other than the team in charge of this study. Submitting your contact information does not obligate you to participate in research.
The study team should get back to you in a few business days.
You will also receive an email with next steps. Check your junk/spam folder if needed.
If you do not hear from the study team, please call 888-689-8273 and tell them you’re interested in study number NCT02790983.