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Registry for patients with ATTR amyloidosis

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

Observational Fondazione IRCCS Policlinico San Matteo di Pavia · NCT05444920

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
Enrollment1000 (estimated)
Ages18 Years to 99 Years
SexAll
SponsorFondazione IRCCS Policlinico San Matteo di Pavia Academic / other
Locations30 sites (Legnano, MI and 29 other locations)
Trial IDNCT05444920 on ClinicalTrials.gov

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.

Who should consider this trial

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.

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

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

Eligibility criteria

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 this trial is running

Legnano, MI and 29 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions ATTR Amyloidosisamyloidosissystemic amyloidosis
Last reviewed 2026-06-15 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.