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 type | Observational |
|---|---|
| Ages | 18 Years to 99 Years |
| Sex | All |
| Enrollment | 1000 (estimated) |
| Sponsor | Fondazione IRCCS Policlinico San Matteo di Pavia Academic / other |
| Locations | 30 sites (Legnano, MI and 29 other locations) |
| Status | Recruiting |
| Started | July 13, 2022 |
| Main results expected | December 31, 2026 |
| Study ends | November 1, 2027 |
| Registry record updated | March 27, 2026 |
| Trial ID | NCT05444920 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
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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
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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
- Study coordinator: Paolo Milani, MD, PhD
- Email: p.milani@smatteo.pv.it
- Phone: +390382502994
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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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.
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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.
-
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.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.