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New registry aims to unlock secrets of rare heart disease from gut tumors

NCT ID NCT07450287

Knowledge-focused Sponsor: National Institute of Cardiology, Warsaw, Poland 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 This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 27, 2026 · Updated 1 time

Summary

This study will create a registry of about 120 patients in Poland who have carcinoid heart disease, a rare complication of neuroendocrine tumors that damages heart valves. Researchers will collect medical records, echocardiograms, and lab results to better understand who develops this condition and how it is managed. The goal is to improve risk prediction and guide treatment decisions, such as when valve surgery or less invasive procedures are needed.

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 registry could help doctors better identify who is at risk for severe heart valve problems from carcinoid tumors and guide better treatment choices.
What could go wrong
This is an observational study, not a treatment trial, so it won't directly test a new therapy. It may not lead to immediate changes in patient 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

About 120 people

The number the study aims to enrol. It can still change while the study runs.

Expected to start

Jun 2026

An estimate. Start dates often move.

Expected to finish

Jun 2027

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

The study population consists of adult patients with carcinoid heart disease who are evaluated and treated at multiple tertiary cardiology and oncology centers across Poland, including the National Institute of Cardiology. Patients included in this registry represent a real-world, multicenter cohort of individuals with neuroendocrine tumors complicated by moderate to severe valvular heart disease. Data are collected retrospectively from consecutive patients meeting eligibility criteria, reflecting standard clinical practice and management of cardiac and oncologic care. The population includes both patients managed conservatively and those considered for surgical or transcatheter valve interventions.

Ages

18 years and older

Sex

Anyone

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: * Age ≥ 18 years. * Confirmed diagnosis of a neuroendocrine tumor consistent with carcinoid heart disease. * Echocardiographic evidence of at least moderate valvular disease associated with endocardial fibrosis. * Elevated NT-proBNP levels (\>260 ng/L) consistent with cardiac dysfunction. * Availability of relevant clinical, echocardiographic, and laboratory data. * For patients who underwent cardiac surgery, histopathological confirmation of carcinoid-related cardiac tissue (if available). * Ability to provide informed consent for participation in the registry (or waiver as per local ethics approval for retrospective data). Exclusion Criteria: * Patients with insufficient clinical or imaging data to confirm carcinoid heart disease. * Presence of other primary cardiac conditions causing significant valvular disease unrelated to carcinoid syndrome (e.g., rheumatic heart disease, congenital valve disease) * Active participation in interventional clinical trials that would conflict with registry data collection * Patients younger than 18 years

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Conditions

The condition(s) this trial relates to.

carcinoid heart disease carcinoid syndrome heart failure heart valve disorder neuroendocrine neoplasm serotonin syndrome

As listed by the trial registrant

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

Carcinoid heart disease Carcinoid syndrome Neuroendocrine tumors Valvular heart disease patients

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • National Institute of Cardiology in Warsaw

    Warsaw, 04-628, Poland

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