Primary Tumor Research and Outcomes Network for Spinal Column Tumors

This is an observational study, meaning it collects information about people with primary spinal column tumors without testing a new treatment. The goal is to create a shared database from many centers to better understand how these tumors affect patients over time. Researchers will gather details about your diagnosis, treatments, and how you're doing, including your survival, if the tumor comes back, and any complications from surgery. This information will help answer important questions about spinal column tumors and improve care for future patients. You can join if you have a current or past primary spinal column tumor, including those inside or around the spinal cord.

Study design
This is an observational study aiming to enroll 1350 participants. It collects information about patients with spinal column tumors.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
You would be followed from enrollment until you withdraw consent, are lost to follow-up, or pass away, which could be up to 25 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT02790983

Primary Tumor Research and Outcomes Network

Recruiting
Not specifiedAll AgesObservational
AO Innovation Translation Center
~1,350 participants
Updated 2026-02-25 on ClinicalTrials.gov

At a glance

Recruiting sites
14 of 19 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Overall survival data
Measured over From the date of enrollment until the date of dropout (ie. consent withdrawal, lost-to follow-up or death) which can be up to 25 years
+2 more outcomes measured
Spinal Column Tumor
19 sites across 16 states
California2
New York2
Italy2
Maryland1
Massachusetts1
Minnesota1
Rhode Island1
Texas1
  • Jeremy Reynolds, MD · PRINCIPAL_INVESTIGATOR · Clinical Lead for Spinal Surgery at Oxford University Hospitals

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Eligibility criteria

Inclusion

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
Written consent provided according to the IRB/EC defined and approved procedures for patients who are not able to provide independent written informed consent
  • Overall survival dataFrom the date of enrollment until the date of dropout (ie. consent withdrawal, lost-to follow-up or death) which can be up to 25 years

    FU visits will be scheduled and performed according to the local standard of care and at each scheduled visit the patient's survival will be documented. In case a patient misses a scheduled visit it will be assessed if the patient is still alive

  • Local disease recurrence dataFrom the date of enrollment until the date of dropout (ie. consent withdrawal, lost-to follow-up or death) which can be up to 25 years

    At first prospective treatment and every FU visit, each patient, regardless of which stage they are at in their treatment, will be evaluated for local disease recurrence. Patients that are classified as "non-virgin" will be evaluated for local disease recurrence also at baseline.

  • Perioperative morbidity dataFrom the date of enrollment until the date of dropout (ie. consent withdrawal, lost-to follow-up or death) which can be up to 25 years

    Complications will be assessed by evaluating the patient's medical files from the time treatment was initiated until the day of follow-up. Intraoperative complications: (Airway/ventilation; Allergic reaction; Anesthesia related; Bone implant interface failure requiring revision; Cardiac; Cord injury; Dural tear; Hardware malposition requiring revision; Hypotension ; Massive blood loss ; Nerve root injury; Pressure sores; Vascular injury; Visceral injury; Other). Pre-/post treatment complications: (Cardiac arrest/failure/arrhythmia; Construct failure with loss of correction; Construct failure without loss of correction; CSF leak/meningocele; Deep vein thrombosis; Deep wound infection; Delirium; Dysphagia; Dysphonia; GI bleeding; Hematoma; Myocardial infarction; Neurologic deterioration; Non-union; Pneumonia; Postoperative neuropathic pain; Pressure sores; Pulmonary embolism; Superficial wound infection; Systemic infection; Urinary tract infection; Wound dehiscence; Other)