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Taking people in CanadaNo phase

Registry following people with primary tumors of the spine

Collects health information from people with a primary spinal column tumor.

Key facts

Who runs it
AO Innovation Translation Center
Where
Toronto and Vancouver, CanadaSee the 2 sitesAlso in 8 other countries, 16 sites
Trial code
Registry title
Primary Tumor Research and Outcomes Network
Status
Recruiting
People taking part
1,350 people, planned
Started
Oct 2016
Expected to end
Dec 2028
Type of study
Observational
Record updated
25 February 2026

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The registry is looking for people who have, or have had, a primary tumor of the spine. Researchers follow their treatment and outcomes over time.

Sex
All sexes can join.
Disease stage
A current or past primary spine tumor, in or around the spinal column or spinal cord. This includes tumors outside the spinal cord covering, inside the spinal cord, and next to the spinal cord.

Main reasons for not taking part

  • A tumor in the spine that spread from another part of the body (metastatic tumor)
  • Not giving informed consent (written consent by an approved route is allowed if the person cannot sign alone)

The registry criteria, word for word

Show all 4 criteriaShow less

Who can take part

  • 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. This includes 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 the Registry Plan (RP); Signed and dated EC/IRB approved written informed consent; OR
  • Written consent provided according to the IRB/EC defined and approved procedures for patients who are not able to provide independent written informed consent

Who cannot take part

  • Patient diagnosed with a metastatic tumor of the spine

Where in Canada

Also in 8 other countries, 16 sites

  • Toronto Western HospitalToronto, CanadaContact: Felix Thomas, PhDNo longer taking part
  • Vancouver General Hospital and the University of British ColumbiaVancouver, CanadaContact: Nicolas Dea, MDTaking people

About the trial

What the trial wants to find out

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.

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
Primary Tumor Research and Outcomes Network (PTRON) A Multicenter Prospective Registry for the Management and Outcomes of Primary Tumors of the Spine
Plain-language title
Registry following people with primary tumors of the spineGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
25 February 2026