NCT05064150Active, not recruiting
Neuroendocrine Tumors - Patient Reported Outcomes
A Cohort Study of Symptom Burden and Therapeutic Selection in Neuroendocrine Tumors (NETs)
Source: ClinicalTrials.gov · Last updated 20 Aug 2026
Brief summary (registry, in English)
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.
- Status (registry)
- Active, not recruiting
- Study type
- Observational
- Enrollment
- 2539 (actual)
- First submitted
- 27 Aug 2021
- Start date
- 10 May 2022
- Primary completion date
- 31 Oct 2026
- Lead sponsor
- University of Iowa
- Diseases
- Neuroendocrine tumours, Lung cancer
- NCT number
- NCT05064150
What you commit to
- Study type: Observational
- Participants enrolled: 2539
- From 10 May 2022 to the primary completion date, 31 Oct 2026
- 14 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Prior treatment
- 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
Who the study is looking for
- (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.
Age in the registry: 18 years to - · Sex: All · Does not accept healthy volunteers
Sites (14)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Regents of the University of Michigan Coordinator of this site? Confirm its status | Ann Arbor | United States | Unknown status |
| The University of North Carolina at Chapel Hill Coordinator of this site? Confirm its status | Chapel Hill | United States | Unknown status |
| The Medical University of South Carolina Coordinator of this site? Confirm its status | Charleston | United States | Unknown status |
| The Ohio State University Coordinator of this site? Confirm its status | Columbus | United States | Unknown status |
| UT Southwestern Medical Center Coordinator of this site? Confirm its status | Dallas | United States | Unknown status |
| University of Florida Coordinator of this site? Confirm its status | Gainesville | United States | Unknown status |
| University of Iowa Coordinator of this site? Confirm its status | Iowa City | United States | Unknown status |
| University of Kansas Medical Center Research Institute, Inc Coordinator of this site? Confirm its status | Kansas City | United States | Unknown status |
| Medical College of Wisconsin, Inc Coordinator of this site? Confirm its status | Milwaukee | United States | Unknown status |
| Allina Health System Coordinator of this site? Confirm its status | Minneapolis | United States | Unknown status |
| Vanderbilt University Medical Center Coordinator of this site? Confirm its status | Nashville | United States | Unknown status |
| University of Pittsburgh Coordinator of this site? Confirm its status | Pittsburgh | United States | Unknown status |
| Mayo Clinic - Rochester Coordinator of this site? Confirm its status | Rochester | United States | Unknown status |
| University of Utah Coordinator of this site? Confirm its status | Salt Lake City | United States | Unknown status |
Related publications
This page is information, not medical advice. Discuss any trial with your doctor.