Neuroendocrine Tumors - Patient Reported Outcomes

Running, not enrolling

Conditions studied: Neuroendocrine Tumors, Gastroenteropancreatic Neuroendocrine Tumor, Lung Neuroendocrine Neoplasm, Neuroendocrine Carcinoma

In brief

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.

Key facts

Study ID

NCT05064150

Run by

University of Iowa

People needed

2539

Starts

2022-05-10

Expected to finish

2026-06-01

Last updated by the study team

2025-12-18

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• (1) Adults age 18 years or older at time of NET diagnosis
• (2) Diagnosis of GEP-NET or lung NET between 1/1/2018 and 09/30/2024, as evidenced by
• (a) medical record information on diagnoses and/or medications and/or treatments and/or test results and/or clinical notes and/or procedures and/or encounters and/or tumor characteristics, and
• (b) patient self-attestation of their diagnosis.

You may not qualify if…

• Any GEP-NET/Lung NET prior to 1/1/18, as evidenced by medical record information on diagnoses and/or medications and/or treatments and/or test results and/or clinical notes and/or procedures and/or encounters and/or tumor characteristics

Where it is running

• University of Florida — Gainesville, Florida, United States
• University of Iowa — Iowa City, Iowa, United States
• University of Kansas Medical Center Research Institute, Inc — Kansas City, Kansas, United States
• Regents of the University of Michigan — Ann Arbor, Michigan, United States
• Allina Health System — Minneapolis, Minnesota, United States
• Mayo Clinic Rochester — Rochester, Minnesota, United States
• The University of North Carolina at Chapel Hill — Chapel Hill, North Carolina, United States
• The Ohio State University — Columbus, Ohio, United States
• University of Pittsburgh — Pittsburgh, Pennsylvania, United States
• The Medical University of South Carolina — Charleston, South Carolina, United States
• Vanderbilt University Medical Center — Nashville, Tennessee, United States
• UT Southwestern Medical Center — Dallas, Texas, United States
• University of Utah — Salt Lake City, Utah, United States
• Medical College of Wisconsin, Inc — Milwaukee, Wisconsin, United States

Full record on ClinicalTrials.gov

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