Primary Tumor Research and Outcome Network



Status:Recruiting
Healthy:No
Age Range:Any
Updated:2/10/2019
Start Date:October 2016
End Date:June 2019
Contact:Severine Hurni, Dr.
Email:severine.hurni@aofoundation.org
Phone:+41 81 414 25 09

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Primary Tumor Research and Outcome Network (PTRON) A Multicenter Prospective Registry for the Management of Primary Tumors of the Spine

Clinical, diagnostic, and therapeutic data specific for primary spinal column tumor patients
will be collected and evaluated to investigate the prognostic factors which influence
survival, local recurrence, adverse events, perioperative morbidity, and HRQOL in subgroups
of patients diagnosed with primary spinal column tumors.

Objective: To prospectively investigate the prognostic variables (clinical, diagnostic, and
therapeutic) within subgroups of patients diagnosed with primary spinal column tumors that
are associated with:

- survival

- local recurrence

- perioperative morbidity

- 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

The investigators aim to collect the following outcome measures:

- Overall survival data

- Local disease recurrence data

- Perioperative morbidity data

Patient reported outcomes:

- Euroqual-5D-3L

- 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

Inclusion Criteria:

- Patient diagnosed with a primary tumor of the spine who receive medical and/or
surgical treatment for the tumor.

- Patient willing and able to participate in the registry and able to attend follow-up
visits, according to the investigator.

- Patient capable of understanding the content of the patient information and Informed
Consent Form (if consent is required by the EC/ IRB at the registry site).

- Patient who has agreed to participate in the registry by providing consent according
to the applicable local law and the declaration of Helsinki.

Exclusion Criteria:

- Patient diagnosed with a metastatic tumor of the spine.

- Patient diagnosed with a primary spinal cord tumor.
We found this trial at
9
sites
Rochester, Minnesota 55905
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185 Cambridge Street
Boston, Massachusetts 02114
617-724-5200
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Boston, MA
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593 Eddy Street
Providence, Rhode Island 02903
401-444-4000
Rhode Island Hospital Founded in 1863, Rhode Island Hospital in Providence, RI, is a private,...
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Providence, RI
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733 North Broadway
Baltimore, Maryland 21205
(410) 955-3182
Johns Hopkins University School of Medicine Johns Hopkins Medicine (JHM), headquartered in Baltimore, Maryland, is...
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Baltimore, MD
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Brisbane,
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1515 Holcombe Blvd
Houston, Texas 77030
 713-792-2121
University of Texas M.D. Anderson Cancer Center The mission of The University of Texas MD...
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Houston, TX
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Los Angeles, California 90095
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Los Angeles, CA
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1275 York Ave
New York, New York 10021
(212) 639-2000
Memorial Sloan Kettering Cancer Center Memorial Sloan Kettering Cancer Center — the world's oldest and...
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New York, NY
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San Francisco, California 94115
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San Francisco, CA
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