ClinicalTrials.gov record NCT05444920

The Italian Transthyretin Amyloidosis Web-Network

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Sep 17, 2026

The Italian Transthyretin Amyloidosis Web-Network (ITA-WebNet)

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.
Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.
Age18 years old to 99 years old
SexAll
LocationItaly
AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

A national online registry collecting diagnosis and follow-up data from people with ATTR amyloidosis. It aims to describe the disease’s real-world course, develop and validate prognostic models and response criteria, and enable data sharing and collaboration among amyloidosis experts. The registry also makes a diagnostic facility available to requesting physicians.

What it is studying. Collects standardized clinical and follow-up data to learn the real-world natural history of ATTR amyloidosis and to define and validate prognostic models and response criteria.

What the researchers hope to learn. Describe the natural history of ATTR amyloidosis in routine care; define and validate prognostic models and response criteria; create an online data-sharing tool and support collaboration among amyloidosis specialists; provide access to a diagnostic facility for requesting physicians.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

The study aims, by generating a large registry of patients with ATTR amyloidosis, including data at diagnosis and during follow up, to describe the natural history of ATTR amyloidosis in a real-world setting and to define and validate prognostic models, response criteria applicable at any point of the disease. The registry will also be used for data sharing and to allow the possibility of a close collaboration amongst the amyloidosis experts of the ARTC and all the physicians around the Country involved in the diagnosis and management of systemic amyloidosis. Thanks to the online registry, the diagnostic facility of the ARTC will be made available to requesting physicians.

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

Inclusion criteria

  • Suspected diagnosis of systemic and localized amyloidosis;
  • age .18 years;
  • 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);
  • planned (or ongoing) follow-up at participating center.

Exclusion criteria

  • Diagnosis of light chain (AL) amyloidosis

Study description and what participation involves

The registry record has no detailed description beyond the summary above.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

Participants sign an informed-consent form and allow their clinical information (diagnosis details, organ involvement, dates, biomarkers, and treatments) to be entered into an online registry. The study collects data at diagnosis and during routine follow-up visits at the participating center; retrospective data can be included if prior consent was given. The registry enables data-sharing among healthcare professionals and experts. The registry record does not list additional specific tests, procedures, or extra study-only visits beyond using existing clinical data and follow-up.

How the study is structured. This is an observational cohort registry. Participating centers enter clinical data at diagnosis and during follow-up into an online database over a target 5-year period. The registry is intended for data sharing and collaboration among clinicians and experts; it uses informed consent for use of clinical data.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

  • This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
  • The listed sites are in Italy. Is any of them reachable for me, and does the study help with travel?
  • Which of the eligibility criteria would need to be checked with tests before I could join?

More on ATTRv amyloidosis

This trial is also listed on this site under AL amyloidosis and wild-type ATTR amyloidosis.

Clinical trials106 trials listed for ATTRv amyloidosisEvery trial the registry lists for ATTRv amyloidosis, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in ATTRv amyloidosis researchLatest monthly update: September 2026. Includes: Gene-silencing drugs. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start
Jul 13, 2022
Primary completion
Dec 31, 2026 (estimated)
Study completion
Nov 1, 2027 (estimated)
Target enrollment
1000 participants (estimated)
Last updated on registry
Mar 27, 2026
Data verified
Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor
Fondazione IRCCS Policlinico San Matteo di Pavia
Principal investigator
Paolo Milani, Principal Investigator
Fondazione IRCCS Policlinico San Matteo di Pavia

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Participating sites (30)

  • ASST Ovest Milanese - Ospedale di LegnanoNot Yet Recruiting

    Legnano, MI · Italy

    • Corinna Antonia Inserra, MD
  • AOU San Luigi GonzagaNot Yet Recruiting

    Orbassano, TO · Italy

    • Carloalberto Biolè, MD
  • AOU Ospedali RiunitiNot Yet Recruiting

    Ancona · Italy

    • Fabio Vagnarelli, MD
  • Policlinico di BariNot Yet Recruiting

    Bari · Italy

    • Rita Rizzi, MD
  • ASST Papa Giovanni XXIIINot Yet Recruiting

    Bergamo · Italy

    • Emilia D'Elia, MD
  • ASST Spedali Civili di BresciaNot Yet Recruiting

    Brescia · Italy

    • Daniela Tomasoni, MD
  • Ospedale Oncologico "Armando Businco"Not Yet Recruiting

    Cagliari · Italy

    • Daniele Derudas, MD
  • Azienda Ospedaliera di CosenzaNot Yet Recruiting

    Cosenza · Italy

    • Enrica Martino, MD
  • Presidio ospedaliero di IvreaNot Yet Recruiting

    Ivrea · Italy

    • Walter Grosso Marra, MD
  • Asst Santi Paolo E CarloNot Yet Recruiting

    Milan · Italy

    • Vittorio Montefusco, MD

Terms used on this page · explanations by MedicalUpdates.ai

registry
An organised collection of information about people with a particular condition, gathered over time for research. Joining a registry usually means sharing medical information, not receiving a treatment.
follow up
The period after treatment or enrolment during which participants are observed or contacted, for example to record side effects or outcomes.
natural history
A study that follows how a condition changes over time without assigning an experimental treatment. It may involve study visits and tests, and is often used to plan future trials.
informed consent
The process of explaining a study, including its risks and what participation involves, so that a person can decide freely whether to take part. Consent is usually documented in writing, and a participant can choose to leave the study later.
Inclusion Criteria
The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion Criteria
The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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