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New registry aims to unlock secrets of rare spine tumors

NCT ID NCT02790983

Knowledge-focused Sponsor: AO Innovation Translation Center Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is creating a large database of people diagnosed with primary tumors of the spine. Researchers will collect information on treatments, survival, tumor recurrence, complications, and quality of life. The goal is to better understand these rare tumors and improve future care.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could help doctors better predict outcomes and choose the best treatments for people with primary spine tumors.
What could go wrong
This is an observational registry, not a treatment trial, so it won't directly test a new therapy. Results depend on the quality of data collected from many centers.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 1,350 people

The number the study aims to enrol. It can still change while the study runs.

Start date

Oct 2016

Expected to finish

Dec 2028

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients diagnosed with a primary tumor of the spine or patients with a history of a spine tumor

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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. 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 Exclusion Criteria: \- Patient diagnosed with a metastatic tumor of the spine.

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Conditions

The condition(s) this trial relates to.

neoplasm spinal cord neoplasm

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Spinal column tumor

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    14 sites in 7 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • IRCCS Istituto Ortopedico Galeazzi

    RECRUITING

    Milan, 20161, Italy

  • Istituto Ortopedico Rizzoli

    RECRUITING

    Bologna, 40136, Italy

  • Johns Hopkins University School of Medicine

    RECRUITING

    Baltimore, Maryland, 21205, United States

  • Kanazawa Medical University Hospital

    TERMINATED

    Kanazawa, 920-8641, Japan

  • Massachusetts General Hospital

    RECRUITING

    Boston, Massachusetts, 02114, United States

  • Mayo Clinic

    RECRUITING

    Rochester, Minnesota, 55905, United States

  • Memorial Sloan Kettering Cancer Center

    RECRUITING

    New York, New York, 1275, United States

  • Memorial Sloan-Kettering Cancer Center

    WITHDRAWN

    New York, New York, 10065, United States

  • National Center for Spinal Disorders and Buda Health Center

    RECRUITING

    Budapest, 1126, Hungary

  • Oxford University Hospitals

    RECRUITING

    Oxford, OX3 7HE, United Kingdom

  • Peking University 3rd Hospital

    RECRUITING

    Beijing, Beijing Municipality, 100191, China

  • Rhode Island Hospital

    RECRUITING

    Providence, Rhode Island, 02903, United States

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

    RECRUITING

    Houston, Texas, 77030, United States

  • Toronto Western Hospital

    TERMINATED

    Toronto, Ontario, M5T 2S8, Canada

  • UCSF Medical Center

    RECRUITING

    San Francisco, California, 94134, United States

  • Universitaetsklinikum Carl Gustav Carus der Techn. Universitaet - Dresden

    RECRUITING

    Dresden, 1307, Germany

  • University of California

    TERMINATED

    Los Angeles, California, 90095, United States

  • University of Queensland, School of Medicine

    WITHDRAWN

    Brisbane, 4000 QLD, Australia

  • Vancouver General Hospital and the University of British Columbia

    RECRUITING

    Vancouver, British Columbia, V5Z 1M9, Canada