Italian Web-Based Registry for Patients with Transthyretin Amyloidosis to Track Disease Progression and Support Collaboration

What this Trial Is About

Researchers are creating a large registry of patients with ATTR amyloidosis to better understand the diseases natural history in a real-world setting. This study aims to collect data from diagnosis and during follow-up to develop and validate models that predict outcomes and response criteria at any stage of the disease. The registry also promotes data sharing and collaboration among amyloidosis experts and physicians nationwide, improving diagnosis and management of systemic amyloidosis. The study involves an online registry tool accessible to healthcare providers, facilitating data entry and sharing. This network allows physicians to request diagnostic support from the Amyloidosis Research and Treatment Center ARTC, enhancing patient care through expert collaboration. The registry collects ongoing data during patient follow-up at participating centers. Participants contribute by allowing their clinical data to be included in the registry, either prospectively or retrospectively if they have given informed consent. Researchers will monitor the establishment and use of the online data-sharing tool over five years. The study does not involve experimental treatments but focuses on observation and data collection to improve understanding and management of ATTR amyloidosis.

The Italian Transthyretin Amyloidosis Web-Network