Neuroendocrine Tumors - Patient Reported Outcomes (NCT05064150)
A Cohort Study of Symptom Burden and Therapeutic Selection in Neuroendocrine Tumors (NETs)
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: University of Florida — Gainesville, Florida
Age range: 18 Years
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (14 Sites)
- University of Florida — Gainesville, Florida
- University of Iowa — Iowa City, Iowa
- University of Kansas Medical Center Research Institute, Inc — Kansas City, Kansas
- Regents of the University of Michigan — Ann Arbor, Michigan
- Allina Health System — Minneapolis, Minnesota
- Mayo Clinic Rochester — Rochester, Minnesota
- The University of North Carolina at Chapel Hill — Chapel Hill, North Carolina
- The Ohio State University — Columbus, Ohio
- University of Pittsburgh — Pittsburgh, Pennsylvania
- The Medical University of South Carolina — Charleston, South Carolina
- Vanderbilt University Medical Center — Nashville, Tennessee
- UT Southwestern Medical Center — Dallas, Texas
- University of Utah — Salt Lake City, Utah
- Medical College of Wisconsin, Inc — Milwaukee, Wisconsin
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Neuroendocrine Tumors
- Targeted Alpha-emitter Therapy of PRRT Naïve and Previous PRRT Neuroendocrine Tumor Patients — Denver, Colorado
- Lu-DOTATATE Treatment in Patients With 68Ga-DOTATATE Somatostatin Receptor Positive Neuroendocrine Tumors — Hamilton, Ontario
- A Safety Study of 212Pb-VMT-alpha-NET in Patients With Neuroendocrine Tumors — Iowa City, Iowa
- Efficacy and Safety of 177Lu-edotreotide PRRT in GEP-NET Patients — Gilbert, Arizona
- Post-Authorization Long-Term Safety Study of LUTATHERA — Phoenix, Arizona
- Lesion-to-lesion Comparison of 68Ga-HA-DOTATATE, 18F-DOPA, and 18F-FDG PET/CT in the Evaluation of Metastatic Neuroendocrine Tumors — Edmonton, Alberta
Explore by condition: All Neuroendocrine Tumors clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Review the official NIH record below to find the coordinating site.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.