RecruitingOBSERVATIONAL

Primary Tumor Research and Outcomes Network

This important project is setting up a special network of hospitals that treat spine cancers. Its main goal is to carefully study patients who have a primary tumor in their spine. By collecting detailed health information from many patients, researchers hope to learn more about how long people live, whether their cancer comes back, and how their quality of life is affected. This information will help doctors understand these conditions better and improve care for people with spinal tumors. It will also help us understand any problems that treatments might cause.

At a glance

Status

Recruiting

Sponsor

AO Innovation Translation Center

Enrolment target

1,350

Start

01 Oct 2016

Estimated completion

01 Dec 2028

Spinal Column Tumor

What is this study about?

Imagine a team of doctors and researchers across many hospitals all working together to understand a specific type of cancer! That's exactly what this project, called the Primary Tumor Research and Outcomes Network, aims to do for people with tumors in their spine.

Doctors want to create a central place to gather information about patients who have primary spinal tumors (tumors that start in the spine, rather than spreading there from another part of the body). By looking at details like the type of tumor, the treatments patients receive, and how they feel over time, the researchers hope to answer some really important questions.

For example, they want to know what helps people live longer, what makes a tumor more likely to come back, and how treatments affect a person's everyday life and well-being. This collected information will help doctors make better decisions and provide even better care for future patients. It's like building a big puzzle, and each patient's information is a vital piece.

Key takeaways

This study focuses on primary spinal tumors (tumors starting in the spine).
It aims to improve understanding of survival, tumor return, and quality of life.
It gathers existing health information and asks patients to complete surveys.
No new treatments or medications are given as part of the study.
Participation helps future patients by advancing doctors' knowledge.

Who may be eligible?

To be part of this study, you would need to have (or have had) a primary tumor in your spine. This includes tumors that are inside or near your spinal column or spinal cord. There are different types of these tumors, such as those inside the spinal cord (like astrocytomas or ependymomas) or those outside but still within the spine area (like meningiomas or schwannomas).

If you meet these criteria, you'll also need to understand what the study involves and agree to take part. This means signing a consent form, which is a document that explains everything clearly. If for some reason you can't sign it yourself, there are other ways to get consent as approved by the study's review board.

You cannot join this study if your spinal tumor has spread to your spine from another part of your body. This study is specifically for tumors that started in the spine.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Do I have, or have I had, a tumor that started in my spine?
Is my spinal tumor NOT one that spread from another part of my body?
Am I able to understand what the study involves and give my consent?
Am I willing to share my health information for research purposes?

Answer every question to see your result.

What does participation involve?

This study is mainly about collecting information over time to learn more about spinal tumors. If you take part, doctors will gather details about your health, your diagnosis, the type of tumor you have, your symptoms, and the treatments you receive. They will also look at scan results.

Additionally, you'll be asked to complete some questionnaires. These surveys will ask about your overall well-being, quality of life, and any pain you might experience in your neck, back, arms, or legs. You might also be asked about your expectations and how satisfied you are with your care. The study aims to follow patients over time, but the exact duration for each person isn't specified, as it depends on your ongoing care and journey.

Potential risks and benefits

Taking part in this study primarily involves sharing your health information and completing questionnaires. There are no new treatments or medications involved, so you won't have the risks associated with those. The main benefit is that your information will help doctors and researchers understand spinal tumors better, which could lead to improved care for others in the future. You always have the right to change your mind and stop participating in the study at any time without it affecting your medical care.

Locations (19)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University of California
Verified postcode
Los Angeles, United States· Terminated
UCSF Medical Center
Verified postcode
San Francisco, United States· Recruiting
Johns Hopkins University School of Medicine
Verified postcode
Baltimore, United States· Recruiting
Massachusetts General Hospital
Verified postcode
Boston, United States· Recruiting
Mayo Clinic
Verified postcode
Rochester, United States· Recruiting
Memorial Sloan-Kettering Cancer Center
Verified postcode
New York, United States· Withdrawn
Memorial Sloan Kettering Cancer Center
Verified postcode
New York, United States· Recruiting
Rhode Island Hospital
Verified postcode
Providence, United States· Recruiting
The University of Texas M.D. Anderson Cancer Center
Verified postcode
Houston, United States· Recruiting
University of Queensland, School of Medicine
Verified postcode
Brisbane, Australia· Withdrawn
Vancouver General Hospital and the University of British Columbia
Verified postcode
Vancouver, Canada· Recruiting
Toronto Western Hospital
Verified postcode
Toronto, Canada· Terminated

Common questions

What kind of spinal tumor needs to be involved?

This study is for primary spinal tumors, meaning the tumor started in your spine, not if it spread there from another part of your body.

Will I receive new treatment if I join this study?

No, this study is about collecting information from your regular care, it doesn't involve any new treatments or medicines.

What kind of information will be collected about me?

Doctors will collect details about your diagnosis, treatments, symptoms, and scan results. You'll also fill out questionnaires about your health and quality of life.

How long will I be part of the study?

The study aims to follow patients over time, but the exact duration isn't set, as it depends on your ongoing care journey.

Can I stop participating if I change my mind?

Yes, you can choose to stop participating at any time, and it won't affect your medical care.

How to find out more

Felix Thomas, PhD

felix.thomas@aofoundation.org +41 79 671 47 98 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.