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Massive study aims to unravel best treatments for neuroendocrine tumors

NCT ID NCT05064150

Knowledge-focused Sponsor: University of Iowa Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing This study
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Aug 21, 2026 · Updated 4 times

Summary

This study follows over 2,500 people with neuroendocrine tumors (NETs) to understand their symptoms and how treatments are chosen. Participants fill out surveys about quality of life and care experiences over 18 months. Researchers will link this to medical records to find which treatments work best with the least side effects. The goal is to help patients and doctors make better decisions together.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could help doctors and patients choose the best treatments for neuroendocrine tumors with fewer side effects.
What could go wrong
This is an observational study, not a treatment trial. It collects data but does not test a new drug or therapy, so it won't directly change care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

2,539 people

The number who actually took part.

Started

May 2022

Expected to finish

Nov 2026

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Inclusion/exclusion criteria will be assessed by a combination of a computable phenotype (computer code or algorithm) that is run against participating site electronic medical record and/or tumor registry data holdings, and/or manual review of patient EMR; and patient self-report.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * (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. Exclusion Criteria: 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

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Conditions

The condition(s) this trial relates to.

digestive system neuroendocrine neoplasm digestive system neuroendocrine tumor, grade 1/2 lung neuroendocrine neoplasm neuroendocrine carcinoma neuroendocrine neoplasm

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Gastroenteropancreatic neuroendocrine tumor Lung neuroendocrine neoplasm Neuroendocrine tumors Neuroendocrine; carcinoma

Contacts and locations

Locations

  • Allina Health System

    Minneapolis, Minnesota, 55407, United States

  • Mayo Clinic Rochester

    Rochester, Minnesota, 55905, United States

  • Medical College of Wisconsin, Inc

    Milwaukee, Wisconsin, 53226, United States

  • Regents of the University of Michigan

    Ann Arbor, Michigan, 48109-1340, United States

  • The Medical University of South Carolina

    Charleston, South Carolina, 29407-4636, United States

  • The Ohio State University

    Columbus, Ohio, 43210, United States

  • The University of North Carolina at Chapel Hill

    Chapel Hill, North Carolina, 27599-1350, United States

  • UT Southwestern Medical Center

    Dallas, Texas, 75390-9020, United States

  • University of Florida

    Gainesville, Florida, 32611-5500, United States

  • University of Iowa

    Iowa City, Iowa, 52242, United States

  • University of Kansas Medical Center Research Institute, Inc

    Kansas City, Kansas, 66103-2937, United States

  • University of Pittsburgh

    Pittsburgh, Pennsylvania, 15260-3203, United States

  • University of Utah

    Salt Lake City, Utah, 84112, United States

  • Vanderbilt University Medical Center

    Nashville, Tennessee, 37203, United States

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