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

March 23, 2026 updated by: Paolo Milani, Fondazione IRCCS Policlinico San Matteo di Pavia

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

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.

Study Overview

Status

Recruiting

Conditions

Study Type

Observational

Enrollment (Estimated)

1000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Locations

  • Italy
      • Ancona, Italy
        • Not yet recruiting
        • AOU Ospedali Riuniti
        • Contact:
          • Fabio Vagnarelli, MD
      • Bari, Italy
        • Not yet recruiting
        • Policlinico di Bari
        • Contact:
          • Rita Rizzi, MD
      • Bergamo, Italy
        • Not yet recruiting
        • ASST Papa Giovanni XXIII
        • Contact:
          • Emilia D'Elia, MD
      • Brescia, Italy
        • Not yet recruiting
        • ASST Spedali Civili di Brescia
        • Contact:
          • Daniela Tomasoni, MD
      • Cagliari, Italy
        • Not yet recruiting
        • Ospedale Oncologico "Armando Businco"
        • Contact:
          • Daniele Derudas, MD
      • Cosenza, Italy
        • Not yet recruiting
        • Azienda Ospedaliera di Cosenza
        • Contact:
          • Enrica Martino, MD
      • Ivrea, Italy
        • Not yet recruiting
        • Presidio ospedaliero di Ivrea
        • Contact:
          • Walter Grosso Marra, MD
      • Milan, Italy
        • Not yet recruiting
        • Asst Santi Paolo E Carlo
        • Contact:
          • Vittorio Montefusco, MD
      • Milan, Italy
        • Not yet recruiting
        • Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico
        • Contact:
          • Gloria Santangelo, MD
      • Milan, Italy
        • Not yet recruiting
        • Istituto Auxologico Italiano
        • Contact:
          • Francesco Perelli, MD
      • Milan, Italy
        • Not yet recruiting
        • IRCCS Istituto Clinico Humanitas
        • Contact:
          • Giuseppe Pinto, MD
      • Milan, Italy
        • Not yet recruiting
        • Istituto Monzino
        • Contact:
          • Mauro Contini, MD
      • Monza, Italy
        • Not yet recruiting
        • IRCCS San Gerardo Monza
        • Contact:
          • Daniela Pini, MD
      • Padua, Italy
        • Not yet recruiting
        • 'Azienda Ospedale. Università di Padova
        • Contact:
          • Alberto Cipriani, MD
      • Pavia, Italy, 27100
        • Recruiting
        • Fondazione IRCCS Policlinico San Matteo
        • Contact:
      • Perugia, Italy
        • Not yet recruiting
        • Azienda Ospedaliera di Perugia
        • Contact:
          • Cinzia Zuchi, MD
      • Pescara, Italy
        • Not yet recruiting
        • Ospedale Civile ASL Pescara
        • Contact:
          • Roberta Magnano, MD
      • Roma, Italy
        • Not yet recruiting
        • Azienda Ospedaliera Sant'Andrea
        • Contact:
          • Beatrice Musumeci, MD
      • Roma, Italy
        • Not yet recruiting
        • Ematologia ASL Roma 1
        • Contact:
          • Tommaso Caravita, MD
      • Roma, Italy
        • Not yet recruiting
        • Fondazione Policlinico Universitario Agostino Gemelli CARDIOLOGIA
        • Contact:
          • Francesca Graziani, MD
      • Roma, Italy
        • Not yet recruiting
        • Policlinico Universitario Agostino Gemelli NEUROLOGIA
        • Contact:
          • Marco Luigetti, MD
      • Salerno, Italy
        • Not yet recruiting
        • Plesso Ospedaliero "Andrea Tortora" di Pagani
        • Contact:
          • Catello Califano, MD
      • Sassari, Italy
        • Not yet recruiting
        • Azienda Ospedaliero Universitaria di Sassari
        • Contact:
          • Giuseppe Damiano Sanna, MD
      • Siena, Italy
        • Not yet recruiting
        • Azienda Ospedaliero Universitaria Senese
        • Contact:
          • Elisa Giacomin, MD
      • Torino, Italy
        • Not yet recruiting
        • Ospedale San Giovanni Bosco
        • Contact:
          • Piera Costanzo, MD
      • Treviglio, Italy
        • Not yet recruiting
        • l'Ospedale di Treviglio-Caravaggio
        • Contact:
          • Giovanna Faggiano, MD
      • Vercelli, Italy
        • Not yet recruiting
        • Osp. Sant'Andrea
        • Contact:
          • Lorenzo De Paoli, MD
      • Vicenza, Italy
        • Not yet recruiting
        • Azienda ULSS 8 Berica
        • Contact:
          • Edoardo Scomazzon, MD
    • MI
      • Legnano, MI, Italy
        • Not yet recruiting
        • Asst Ovest Milanese - Ospedale Di Legnano
        • Contact:
          • Corinna Antonia Inserra, MD
    • TO
      • Orbassano, TO, Italy
        • Not yet recruiting
        • AOU San Luigi Gonzaga
        • Contact:
          • Carloalberto Biolè, MD

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years to 99 years (Adult, Older Adult)

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

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

Description

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Cohort
  • Time Perspectives: Other

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Establishing an online tool for data-sharing, available for health care providers
Time Frame: 5 years
Different data (types type of organ involvement, biomarkers of organ damage, date of onset of symptoms, date of diagnosis, type of treatment (if any)) will be shared between the health-care professionals and the panel of experts.
5 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Fondazione IRCCS Policlinico San Matteo di Pavia

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

July 13, 2022

Primary Completion (Estimated)

December 31, 2026

Study Completion (Estimated)

November 1, 2027

Study Registration Dates

First Submitted

June 30, 2022

First Submitted That Met QC Criteria

June 30, 2022

First Posted (Actual)

July 6, 2022

Study Record Updates

Last Update Posted (Actual)

March 27, 2026

Last Update Submitted That Met QC Criteria

March 23, 2026

Last Verified

March 1, 2026

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • AC-019-IT

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

NO

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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