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Nationwide registry aims to crack the code of a rare protein-clogging disease

NCT ID NCT07689331

Knowledge-focused Sponsor: Semmelweis University Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jul 08, 2026 · Last updated Jul 09, 2026 · Updated 1 time

Summary

This study is a national registry in Hungary that collects medical information from people diagnosed with systemic amyloidosis, a rare disease where abnormal proteins build up in organs. Researchers will look at patient records to understand how the disease starts, how it is diagnosed, and how it progresses over time. The goal is to gather real-world data that could help improve future diagnosis and care for people with this condition.

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
This registry could help doctors spot systemic amyloidosis earlier and improve care by revealing patterns in symptoms, diagnosis, and organ involvement.
What could go wrong
This is an observational registry, not a treatment trial. It collects existing data and cannot directly test new therapies or change outcomes for participants.

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 300 people

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

Started

Mar 2026

Expected to finish

May 2028

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

Patients diagnosed with systemic amyloidosis in Hungary

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: * Diagnosis of systemic amyloidosis * Patients aged ≥18 years at the time of enrollment * Signed informed consent form by the patient * Treating physician's consent * Availability of accessible medical history Exclusion Criteria: * Lack of informed consent in the prospective study

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Conditions

The condition(s) this trial relates to.

AL amyloidosis Amyloid Neuropathies, Familial hereditary amyloidosis Immunoglobulin Light-chain Amyloidosis primary systemic amyloidosis restrictive cardiomyopathy wild type ATTR amyloidosis

As listed by the trial registrant

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

Al amyloidosis Amyloid cardiomyopathy Attr amyloidosis Systemic amyloidosis

How to take part

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

  1. The places running it

    12 sites. 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

  • Balatonfüredi Állami Szívkórház

    RECRUITING

    Balatonfüred, 8230, Hungary

  • Budapesti Péterfy Sándor utcai Kórház - Rendelőintézet

    RECRUITING

    Budapest, 1076, Hungary

  • Budapesti Szent Margit Kórház

    RECRUITING

    Budapest, 1032, Hungary

  • Clinical Centre, University of Debrecen

    RECRUITING

    Debrecen, 4032, Hungary

  • Department of Internal Medicine and Hematology, Semmelweis University

    RECRUITING

    Budapest, 1088, Hungary

  • Dél-budai Centrumkórház Szent Imre Egyetemi Oktatókórház

    RECRUITING

    Budapest, 1115, Hungary

  • Dél-pesti Centrumkórház - Országos Hematológiai és Infektológiai Intézet

    RECRUITING

    Budapest, 1097, Hungary

  • Fejér Vármegyei Szent György Egyetemi Oktató Kórház

    RECRUITING

    Székesfehérvár, 8000, Hungary

  • Gottsegen National Cardiovascular Center

    RECRUITING

    Budapest, 1096, Hungary

  • Pécsi Tudományegyetem

    RECRUITING

    Pécs, 7623, Hungary

  • Szegedi Tudományegyetem

    RECRUITING

    Szeged, 6725, Hungary

  • Észak-Pesti Centrumkórház - Honvédkórház

    RECRUITING

    Budapest, 1134, Hungary

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