Primary Tumor Research and Outcomes Network

Last updated: February 24, 2026
Sponsor: AO Innovation Translation Center
Overall Status: Active - Recruiting

Phase

N/A

Condition

Neoplasms

Treatment

N/A

Clinical Study ID

NCT02790983
PTRON
  • All Genders

Study 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.

Eligibility Criteria

Inclusion

Inclusion criteria

  • Patient with a current primary spine tumor or history of a primary spine tumor,including tumors within or surrounding the spinal column and/or spinal cord. Thisincludes extradural tumors, intramedullary tumors (i.e. astrocytomas, ependymoma,etc.) and extramedullary tumors (i.e. meningiomas, neurofibromas, schwannomas,etc.).

  • Informed consent obtained, i.e.:

  • Ability to understand the content of the patient information/ICF

  • Willingness and ability to participate in the registry according to theRegistry Plan (RP)

  • Signed and dated EC/IRB approved written informed consent

OR

  • Written consent provided according to the IRB/EC defined and approved procedures forpatients who are not able to provide independent written informed consent

Exclusion

Exclusion Criteria:

  • Patient diagnosed with a metastatic tumor of the spine.

Study Design

Total Participants: 1350
Study Start date:
October 01, 2016
Estimated Completion Date:
December 31, 2028

Study 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

Connect with a study center

  • University of Queensland, School of Medicine

    Brisbane, 4000 QLD
    Australia

    Site Not Available

  • University of Queensland, School of Medicine

    Brisbane 2174003, 4000 QLD
    Australia

    Site Not Available

  • Vancouver General Hospital and the University of British Columbia

    Vancouver, British Columbia V5Z 1M9
    Canada

    Site Not Available

  • Vancouver General Hospital and the University of British Columbia

    Vancouver 6173331, British Columbia 5909050 V5Z 1M9
    Canada

    Active - Recruiting

  • Toronto Western Hospital

    Toronto, Ontario M5T 2S8
    Canada

    Site Not Available

  • Toronto Western Hospital

    Toronto 6167865, Ontario 6093943 M5T 2S8
    Canada

    Terminated

  • Peking University 3rd Hospital

    Beijing, Beijing 100191
    China

    Site Not Available

  • Peking University 3rd Hospital

    Beijing 1816670, Beijing Municipality 2038349 100191
    China

    Active - Recruiting

  • Universitaetsklinikum Carl Gustav Carus der Techn. Universitaet - Dresden

    Dresden, 1307
    Germany

    Site Not Available

  • Universitaetsklinikum Carl Gustav Carus der Techn. Universitaet - Dresden

    Dresden 2935022, 1307
    Germany

    Active - Recruiting

  • National Center for Spinal Disorders and Buda Health Center

    Budapest, 1126
    Hungary

    Site Not Available

  • National Center for Spinal Disorders and Buda Health Center

    Budapest 3054643, 1126
    Hungary

    Active - Recruiting

  • Istituto Ortopedico Rizzoli

    Bologna, 40136
    Italy

    Site Not Available

  • Istituto Ortopedico Rizzoli

    Bologna 3181928, 40136
    Italy

    Active - Recruiting

  • IRCCS Istituto Ortopedico Galeazzi

    Milan 6951411, 20161
    Italy

    Active - Recruiting

  • IRCCS Istituto Ortopedico Galeazzi

    Milano, 20161
    Italy

    Site Not Available

  • Kanazawa Medical University Hospital

    Kanazawa, 920-8641
    Japan

    Site Not Available

  • Kanazawa Medical University Hospital

    Kanazawa 1860243, 920-8641
    Japan

    Terminated

  • Oxford University Hospitals

    Oxford, OX3 7HE
    United Kingdom

    Site Not Available

  • Oxford University Hospitals

    Oxford 2640729, OX3 7HE
    United Kingdom

    Active - Recruiting

  • University of California

    Los Angeles, California 90095
    United States

    Site Not Available

  • UCSF Medical Center

    San Francisco, California 94134
    United States

    Site Not Available

  • University of California

    Los Angeles 5368361, California 5332921 90095
    United States

    Terminated

  • UCSF Medical Center

    San Francisco 5391959, California 5332921 94134
    United States

    Active - Recruiting

  • Johns Hopkins University School of Medicine

    Baltimore, Maryland 21205
    United States

    Site Not Available

  • Johns Hopkins University School of Medicine

    Baltimore 4347778, Maryland 4361885 21205
    United States

    Active - Recruiting

  • Massachusetts General Hospital

    Boston, Massachusetts 02114
    United States

    Site Not Available

  • Massachusetts General Hospital

    Boston 4930956, Massachusetts 6254926 02114
    United States

    Active - Recruiting

  • Mayo Clinic

    Rochester, Minnesota 55905
    United States

    Site Not Available

  • Mayo Clinic

    Rochester 5043473, Minnesota 5037779 55905
    United States

    Active - Recruiting

  • Memorial Sloan Kettering Cancer Center

    New York, New York 1275
    United States

    Active - Recruiting

  • Memorial Sloan-Kettering Cancer Center

    New York, New York 10065
    United States

    Site Not Available

  • Memorial Sloan Kettering Cancer Center

    New York 5128581, New York 5128638 1275
    United States

    Active - Recruiting

  • Memorial Sloan-Kettering Cancer Center

    New York 5128581, New York 5128638 10065
    United States

    Site Not Available

  • Rhode Island Hospital

    Providence, Rhode Island 02903
    United States

    Site Not Available

  • Rhode Island Hospital

    Providence 5224151, Rhode Island 5224323 02903
    United States

    Active - Recruiting

  • The University of Texas M.D. Anderson Cancer Center

    Houston, Texas 77030
    United States

    Site Not Available

  • The University of Texas M.D. Anderson Cancer Center

    Houston 4699066, Texas 4736286 77030
    United States

    Active - Recruiting

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