The Italian Transthyretin Amyloidosis Web-Network

Launched by FONDAZIONE IRCCS POLICLINICO SAN MATTEO DI PAVIA · Jun 30, 2022

Keywords

ClinConnect Summary

The Italian Transthyretin Amyloidosis Web-Network is a clinical trial focused on gathering information about a condition called ATTR amyloidosis. This rare disease occurs when a protein called transthyretin builds up in the body and can cause various health issues. The goal of the study is to create a large database of patients with ATTR amyloidosis, which will help doctors better understand how the disease progresses and improve ways to manage it. By collecting data from patients at the time of diagnosis and during their follow-ups, researchers hope to develop useful tools for predicting patient outcomes and responses to treatment.

To participate in this trial, individuals must be at least 18 years old and have a suspected diagnosis of systemic or localized amyloidosis, but they cannot have light chain (AL) amyloidosis. Participants will have the opportunity to share their health information, which will contribute to a deeper understanding of the disease and enhance collaboration between specialists in amyloidosis across the country. Those who join the study can expect to be part of a supportive network that aims to improve care for all patients dealing with this condition.

Gender

ALL

Eligibility 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