Clinical trial Recruiting at 1 site Observational Ages 18 to 99

Registry for patients with ATTR amyloidosis

Official title: The Italian Transthyretin Amyloidosis Web-Network (ITA-WebNet)

Run by Fondazione IRCCS Policlinico San Matteo di Pavia · NCT05444920 · Data updated 2026-11-12

This study is creating a detailed registry for people with ATTR amyloidosis to track their health over time and help doctors understand the disease better.

Quick facts

Study typeObservational
Ages18 Years to 99 Years
SexAll
Enrollment1000 (estimated)
SponsorFondazione IRCCS Policlinico San Matteo di Pavia
Academic / other
Locations30 sites (Legnano, MI and 29 other locations)
StatusRecruiting
StartedJuly 13, 2022
Main results expectedDecember 31, 2026
Study endsNovember 1, 2027
Registry record updatedMarch 27, 2026
Trial IDNCT05444920 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include adults over 18 years with a suspected diagnosis of systemic or localized amyloidosis who are willing to participate in follow-up at the participating center.

Probably not a fit

Patients diagnosed with light chain (AL) amyloidosis will not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to create a comprehensive registry of patients diagnosed with ATTR amyloidosis, collecting data at diagnosis and throughout follow-up. The goal is to describe the natural history of the disease in a real-world context and to develop and validate prognostic models and response criteria that can be applied at any stage of the condition. The registry will facilitate collaboration among amyloidosis experts and provide diagnostic resources to physicians across Italy.

Why it matters

Potential benefit: If successful, this study could enhance understanding of ATTR amyloidosis and improve patient management through better prognostic models.

How similar studies have gone: While there have been registries for other forms of amyloidosis, this specific approach for ATTR amyloidosis is relatively novel.

Who can join: the full rules

Show full inclusion / exclusion criteria
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

Where it's running

  • Fondazione IRCCS Policlinico San Matteo
    Pavia, Italy
    Recruiting
  • ASST Ovest Milanese - Ospedale di Legnano
    Legnano, Mi, Italy
    Not yet recruiting
  • AOU San Luigi Gonzaga
    Orbassano, To, Italy
    Not yet recruiting
  • AOU Ospedali Riuniti
    Ancona, Italy
    Not yet recruiting
  • Policlinico di Bari
    Bari, Italy
    Not yet recruiting
  • ASST Papa Giovanni XXIII
    Bergamo, Italy
    Not yet recruiting
Show 24 more locations
  • ASST Spedali Civili di Brescia
    Brescia, Italy
    Not yet recruiting
  • Ospedale Oncologico "Armando Businco"
    Cagliari, Italy
    Not yet recruiting
  • Azienda Ospedaliera di Cosenza
    Cosenza, Italy
    Not yet recruiting
  • Presidio ospedaliero di Ivrea
    Ivrea, Italy
    Not yet recruiting
  • Asst Santi Paolo E Carlo
    Milan, Italy
    Not yet recruiting
  • Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico
    Milan, Italy
    Not yet recruiting
  • IRCCS Istituto Clinico Humanitas
    Milan, Italy
    Not yet recruiting
  • Istituto Auxologico Italiano
    Milan, Italy
    Not yet recruiting
  • Istituto Monzino
    Milan, Italy
    Not yet recruiting
  • IRCCS San Gerardo Monza
    Monza, Italy
    Not yet recruiting
  • 'Azienda Ospedale. Università di Padova
    Padova, Italy
    Not yet recruiting
  • Azienda Ospedaliera di Perugia
    Perugia, Italy
    Not yet recruiting
  • Ospedale Civile ASL Pescara
    Pescara, Italy
    Not yet recruiting
  • Azienda Ospedaliera Sant'Andrea
    Roma, Italy
    Not yet recruiting
  • Ematologia ASL Roma 1
    Roma, Italy
    Not yet recruiting
  • Fondazione Policlinico Universitario Agostino Gemelli CARDIOLOGIA
    Roma, Italy
    Not yet recruiting
  • Policlinico Universitario Agostino Gemelli NEUROLOGIA
    Roma, Italy
    Not yet recruiting
  • Plesso Ospedaliero "Andrea Tortora" di Pagani
    Salerno, Italy
    Not yet recruiting
  • Azienda Ospedaliero Universitaria di Sassari
    Sassari, Italy
    Not yet recruiting
  • Azienda Ospedaliero Universitaria Senese
    Siena, Italy
    Not yet recruiting
  • Ospedale San Giovanni Bosco
    Torino, Italy
    Not yet recruiting
  • l'Ospedale di Treviglio-Caravaggio
    Treviglio, Italy
    Not yet recruiting
  • Osp. Sant'Andrea
    Vercelli, Italy
    Not yet recruiting
  • Azienda Ulss 8 Berica
    Vicenza, Italy
    Not yet recruiting

Study contacts

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

  • Hungarian National Systemic Amyloidosis Registry

    This registry collects medical data from adults with systemic amyloidosis across Hungary to help understand how the disease is diagnosed and treated in real-world practice.

    Recruiting at 12 sites Semmelweis University · Balatonfüred and 11 other locations · NCT07689331

  • Understanding the characteristics and treatment of patients with ATTR amyloidosis

    This study is looking to understand the experiences and treatments of people with ATTR amyloidosis to see how the disease affects their lives and how it is managed over time.

    Recruiting at 5 sites AstraZeneca · Eden Prairie, Minnesota and 28 other locations · NCT06355934

  • Observational study of patients with ATTR amyloidosis

    This study looks at the characteristics of people with ATTR amyloidosis and tests how well existing treatments work for them in real life.

    Recruiting at 38 sites Alnylam Pharmaceuticals · La Jolla, California and 39 other locations · NCT04561518

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.