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New italian registry aims to unlock secrets of rare heart disease

NCT ID NCT05444920

Knowledge-focused Sponsor: Fondazione IRCCS Policlinico San Matteo di Pavia 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study is creating a large database of 1,000 people with ATTR amyloidosis, a rare disease that causes abnormal protein buildup in organs. Researchers will collect health information over time to better understand how the disease progresses and to develop tools that help doctors predict outcomes. No new treatments are being tested; the goal is to improve knowledge and care for patients across Italy.

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 1,000 people

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

Started

Jul 2022

Expected to finish

Nov 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

Patients will be entered the database pending on expressing an informed consent of the use of their data for research purposes. Data of deceased patients will be used only if they have expressed their consent to the use of their clinical data

Ages

18 to 99 years

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. Suspected diagnosis of systemic and localized amyloidosis; 2. age .18 years; 3. ability to understand and willingness to sign an informed consent (patients who already sign informed consent for clinical data to be used in retrospective analyses will be accepted); 4. planned (or ongoing) follow-up at participating center. Exclusion Criteria: 1\. Diagnosis of light chain (AL) amyloidosis

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Conditions

The condition(s) this trial relates to.

amyloidosis familial amyloid neuropathy hereditary amyloidosis Immunoglobulin Light-chain Amyloidosis

As listed by the trial registrant

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

Attr amyloidosis

How to take part

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

  1. The places running it

    30 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

  • 'Azienda Ospedale. Università di Padova

    NOT_YET_RECRUITING

    Padova, Italy

  • AOU Ospedali Riuniti

    NOT_YET_RECRUITING

    Ancona, Italy

  • AOU San Luigi Gonzaga

    NOT_YET_RECRUITING

    Orbassano, TO, Italy

  • ASST Ovest Milanese - Ospedale di Legnano

    NOT_YET_RECRUITING

    Legnano, MI, Italy

  • ASST Papa Giovanni XXIII

    NOT_YET_RECRUITING

    Bergamo, Italy

  • ASST Spedali Civili di Brescia

    NOT_YET_RECRUITING

    Brescia, Italy

  • Asst Santi Paolo E Carlo

    NOT_YET_RECRUITING

    Milan, Italy

  • Azienda Ospedaliera Sant'Andrea

    NOT_YET_RECRUITING

    Roma, Italy

  • Azienda Ospedaliera di Cosenza

    NOT_YET_RECRUITING

    Cosenza, Italy

  • Azienda Ospedaliera di Perugia

    NOT_YET_RECRUITING

    Perugia, Italy

  • Azienda Ospedaliero Universitaria Senese

    NOT_YET_RECRUITING

    Siena, Italy

  • Azienda Ospedaliero Universitaria di Sassari

    NOT_YET_RECRUITING

    Sassari, Italy

  • Azienda Ulss 8 Berica

    NOT_YET_RECRUITING

    Vicenza, Italy

  • Ematologia ASL Roma 1

    NOT_YET_RECRUITING

    Roma, Italy

  • Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico

    NOT_YET_RECRUITING

    Milan, Italy

  • Fondazione IRCCS Policlinico San Matteo

    RECRUITING

    Pavia, 27100, Italy

  • Fondazione Policlinico Universitario Agostino Gemelli CARDIOLOGIA

    NOT_YET_RECRUITING

    Roma, Italy

  • IRCCS Istituto Clinico Humanitas

    NOT_YET_RECRUITING

    Milan, Italy

  • IRCCS San Gerardo Monza

    NOT_YET_RECRUITING

    Monza, Italy

  • Istituto Auxologico Italiano

    NOT_YET_RECRUITING

    Milan, Italy

  • Istituto Monzino

    NOT_YET_RECRUITING

    Milan, Italy

  • Osp. Sant'Andrea

    NOT_YET_RECRUITING

    Vercelli, Italy

  • Ospedale Civile ASL Pescara

    NOT_YET_RECRUITING

    Pescara, Italy

  • Ospedale Oncologico "Armando Businco"

    NOT_YET_RECRUITING

    Cagliari, Italy

  • Ospedale San Giovanni Bosco

    NOT_YET_RECRUITING

    Torino, Italy

  • Plesso Ospedaliero "Andrea Tortora" di Pagani

    NOT_YET_RECRUITING

    Salerno, Italy

  • Policlinico Universitario Agostino Gemelli NEUROLOGIA

    NOT_YET_RECRUITING

    Roma, Italy

  • Policlinico di Bari

    NOT_YET_RECRUITING

    Bari, Italy

  • Presidio ospedaliero di Ivrea

    NOT_YET_RECRUITING

    Ivrea, Italy

  • l'Ospedale di Treviglio-Caravaggio

    NOT_YET_RECRUITING

    Treviglio, Italy

More trials for these conditions

Other studies related to the condition(s) this trial covers.