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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.
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| Measure | Description | Time Frame |
|---|---|---|
| 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. | 5 years |
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Inclusion Criteria:
Exclusion Criteria:
1. Diagnosis of light chain (AL) amyloidosis
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Patients will be entered the database pending on expressing an informed consent of the use of their data for research purposes. Data of deceased patients will be used only if they have expressed their consent to the use of their clinical data
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Paolo Milani, MD, PhD | Contact | +390382502994 | p.milani@smatteo.pv.it |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| ASST Ovest Milanese - Ospedale di Legnano | Not yet recruiting | Legnano | MI | Italy |
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| AOU San Luigi Gonzaga | Not yet recruiting | Orbassano | TO | Italy |
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| AOU Ospedali Riuniti | Not yet recruiting | Ancona | Italy |
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| Policlinico di Bari | Not yet recruiting | Bari | Italy |
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| ASST Papa Giovanni XXIII | Not yet recruiting | Bergamo | Italy |
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| ASST Spedali Civili di Brescia | Not yet recruiting | Brescia | Italy |
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| Ospedale Oncologico "Armando Businco" | Not yet recruiting | Cagliari | Italy |
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| Azienda Ospedaliera di Cosenza | Not yet recruiting | Cosenza | Italy |
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| Presidio ospedaliero di Ivrea | Not yet recruiting | Ivrea | Italy |
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| Asst Santi Paolo E Carlo | Not yet recruiting | Milan | Italy |
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| Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico | Not yet recruiting | Milan | Italy |
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| IRCCS Istituto Clinico Humanitas | Not yet recruiting | Milan | Italy |
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| Istituto Auxologico Italiano | Not yet recruiting | Milan | Italy |
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| Istituto Monzino | Not yet recruiting | Milan | Italy |
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| IRCCS San Gerardo Monza | Not yet recruiting | Monza | Italy |
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| 'Azienda Ospedale. Università di Padova | Not yet recruiting | Padova | Italy |
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| Fondazione IRCCS Policlinico San Matteo | Recruiting | Pavia | 27100 | Italy |
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| Azienda Ospedaliera di Perugia | Not yet recruiting | Perugia | Italy |
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| Ospedale Civile ASL Pescara | Not yet recruiting | Pescara | Italy |
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| Azienda Ospedaliera Sant'Andrea | Not yet recruiting | Roma | Italy |
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| Ematologia ASL Roma 1 | Not yet recruiting | Roma | Italy |
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| Fondazione Policlinico Universitario Agostino Gemelli CARDIOLOGIA | Not yet recruiting | Roma | Italy |
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| Policlinico Universitario Agostino Gemelli NEUROLOGIA | Not yet recruiting | Roma | Italy |
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| Plesso Ospedaliero "Andrea Tortora" di Pagani | Not yet recruiting | Salerno | Italy |
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| Azienda Ospedaliero Universitaria di Sassari | Not yet recruiting | Sassari | Italy |
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| Azienda Ospedaliero Universitaria Senese | Not yet recruiting | Siena | Italy |
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| Ospedale San Giovanni Bosco | Not yet recruiting | Torino | Italy |
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| l'Ospedale di Treviglio-Caravaggio | Not yet recruiting | Treviglio | Italy |
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| Osp. Sant'Andrea | Not yet recruiting | Vercelli | Italy |
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| Azienda Ulss 8 Berica | Not yet recruiting | Vicenza | Italy |
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| ID | Term |
|---|---|
| D000686 | Amyloidosis |
| D000075363 | Immunoglobulin Light-chain Amyloidosis |
| ID | Term |
|---|---|
| D057165 | Proteostasis Deficiencies |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D054219 | Neoplasms, Plasma Cell |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
| D008232 | Lymphoproliferative Disorders |
| D007160 | Immunoproliferative Disorders |
| D007154 | Immune System Diseases |
| D010265 | Paraproteinemias |
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