The Italian Transthyretin Amyloidosis Web-Network

Fondazione IRCCS Policlinico San Matteo di Pavia1,000 enrolled

Overview

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 Type

OBSERVATIONAL

Enrollment

1,000

Conditions

ATTR Amyloidosis

Eligibility

Sex: ALLMin age: 18 YearsMax age: 99 Years

Medical Language ↔ Plain English

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

Locations (1)

Fondazione IRCCS Policlinico San Matteo

Outcomes

Primary Outcomes

Establishing an online tool for data-sharing, available for health care providers

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.

Time frame: 5 years