Primary Tumor Research and Outcomes Network

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.

Objective: To prospectively investigate variables (clinical, diagnostic, and therapeutic) in patients diagnosed with primary spinal column and cord tumors that are associated with:

• survival
• local recurrence
• morbidity data
• 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

We aim to collect the following outcome measures:

• Overall survival data
• Local disease recurrence data
• Morbidity data
• Patient reported outcomes:
• Euroquol-5D-3L, EQ-5D-Y (if applicable)
• 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 (SOSGOQ) v1.0 and v2.0
• Surverys on patient expectations and satisfaction