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
ASST Ovest Milanese - Ospedale di Legnano
Legnano, MI, Italy
NOT_YET_RECRUITINGAOU San Luigi Gonzaga
Orbassano, TO, Italy
NOT_YET_RECRUITINGAOU Ospedali Riuniti
Ancona, Italy
NOT_YET_RECRUITINGPoliclinico di Bari
Bari, Italy
NOT_YET_RECRUITINGASST Papa Giovanni XXIII
Bergamo, Italy
NOT_YET_RECRUITINGASST Spedali Civili di Brescia
Brescia, Italy
NOT_YET_RECRUITINGOspedale Oncologico "Armando Businco"
Cagliari, Italy
NOT_YET_RECRUITINGAzienda Ospedaliera di Cosenza
Cosenza, Italy
NOT_YET_RECRUITINGPresidio ospedaliero di Ivrea
Ivrea, Italy
NOT_YET_RECRUITINGAsst Santi Paolo E Carlo
Milan, Italy
NOT_YET_RECRUITING...and 20 more locations
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
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