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observational epidemiological study of patients affected by systemic amyloidosis
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| Measure | Description | Time Frame |
|---|---|---|
| prevalence of amyloidosis | prevalence of amyloidosis in patients admitted to the UOs participating in the study | throughout the study period until 10 years |
| incidence of amyloidosis | incidence of amyloidosis in patients admitted to the UOs participating in the study | throughout the study period until 10 years |
| Observational epidemiological study of patients with systemic amyloidosis | characteristics of each etiology in terms of baseline clinical data | throughout the study period until 10 years |
| Types of cardiac clinical phenotype | Cardiac clinical phenotype in patients who at baseline are asymptomatic carriers of pathogenic mutations | throughout the study period until 10 years |
| Incidence of mixed clinical phenotype | Mixed clinical phenotype in patients who at baseline are asymptomatic carriers of pathogenic mutations | throughout the study period until 10 years |
| Incidence of hospitalization for heart failure | Incidence during follow-up of hospitalization for heart failure | throughout the study period until 10 years |
| Incidence of hospitalization for onset of arrhythmias | Incidence during follow-up of hospitalization for onset of arrhythmias |
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Inclusion Criteria:
Exclusion Criteria:
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The study population includes all adult patients referred to the participating centers with a diagnosis of amyloidosis or carriers of pathogenic mutations starting from 01/01/1981 diagnosed in accordance with current international guidelines.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| simone longhi, MD | Contact | 00390512149039 | simone.longhi@aosp.bo.it |
| Name | Affiliation | Role |
|---|---|---|
| Simone Longhi, MD | IRCCS Azienda Ospedaliero-Universitaria di Bologna | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| IRCCS Azienda Ospedaliero-Universitaria di Bologna | Recruiting | Bologna | 40138 | Italy |
Confidenciality
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| ID | Term |
|---|---|
| D009202 | Cardiomyopathies |
| D028227 | Amyloid Neuropathies, Familial |
| ID | Term |
|---|---|
| D006331 | Heart Diseases |
| D002318 | Cardiovascular Diseases |
| D020271 | Heredodegenerative Disorders, Nervous System |
| D019636 | Neurodegenerative Diseases |
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| throughout the study period until 10 years |
| Incidence of hospitalization for stroke | Incidence of hospitalization for stroke during follow-up | throughout the study period until 10 years |
| incidence of pacemaker implantation | incidence during follow-up of need for pacemaker implantation | throughout the study period until 10 years |
| incidence of pacemaker implantation of defibrillator | incidence during follow-up of need for defibrillator implantation | throughout the study period until 10 years |
| Incidence of cardiac transplantation | incidence during follow-up of need for cardiac transplantation | throughout the study period until 10 years |
| Incidence of transplantation of other solid organs | incidence during follow-up of need for other solid organ transplantation | throughout the study period until 10 years |
| Mortality | total mortality during follow up | throughout the study period until 10 years |
| D009422 | Nervous System Diseases |
| D017772 | Amyloid Neuropathies |
| D010523 | Peripheral Nervous System Diseases |
| D009468 | Neuromuscular Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D028226 | Amyloidosis, Familial |
| D008661 | Metabolism, Inborn Errors |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D000686 | Amyloidosis |
| D057165 | Proteostasis Deficiencies |