Neuroendocrine Tumors - Patient Reported Outcomes

Summary

With so many therapeutic options available (i.e.: biologic therapy, liver directed therapy, radiotherapy and chemotherapy), the purpose of this project is to partner with patients on comparative effectiveness research (CER) to achieve the goal of alleviating undue toxicity, and optimizing effectiveness and sequencing of therapy for neuroendocrine tumors (NET) patients. We will conduct a study of all newly occurring GEP-NET and lung NET cases aged 18 years and older diagnosed between 01/01/2018 through 09/30/2024 across 14 sites participating in the National Patient-Centered Clinical Research Network (PCORnet), enrolling an average of 215 patients per site over the 3 year study period (2515 patients total), allowing up to 60 months of follow-up for medical record outcomes. Participants will complete four online or paper surveys over 18 months; these surveys will focus on patient-reported outcomes, including questions on quality of life, treatment decisions, and experiences with cancer care. Survey data will be linked to participant medical record data to achieve study aims.

Conditions

• Neuroendocrine Tumors
• Gastroenteropancreatic Neuroendocrine Tumor
• Lung Neuroendocrine Neoplasm
• Neuroendocrine Carcinoma

Sponsors & Collaborators

• Allina Health System

  collaborator OTHER

• Medical College of Wisconsin

  collaborator OTHER

• University of Kansas Medical Center

  collaborator OTHER

• University of Texas Southwestern Medical Center

  collaborator OTHER

• University of Utah

  collaborator OTHER

• University of Florida

  collaborator OTHER

• Ohio State University

  collaborator OTHER

• University of Michigan

  collaborator OTHER

• University of Pittsburgh Medical Center

  collaborator OTHER

• Medical University of South Carolina

  collaborator OTHER

• University of North Carolina, Chapel Hill

  collaborator OTHER

• Vanderbilt University Medical Center

  collaborator OTHER

• Mayo Clinic

  collaborator OTHER

• Northern California CarciNET Community

  collaborator UNKNOWN

• Neuroendocrine Cancer Awareness Network

  collaborator UNKNOWN

• Neuroendocrine Tumor Research Foundation

  collaborator UNKNOWN

• Healing NET Foundation

  collaborator UNKNOWN

• Patient-Centered Outcomes Research Institute

  collaborator OTHER

• University of Iowa

  lead OTHER

Principal Investigators

• Michael O'Rorke, PhD · University of Iowa

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2022-05-10

Primary Completion

2026-06-30

Completion

2026-06-30

Countries

• United States

Study Locations