Hungarian National Registry for Systemic Amyloidosis Patients A Long-Term Observational Study Across Multiple Medical Centers

What this Trial Is About

Researchers are collecting and analyzing data from patients with systemic amyloidosis treated in various medical departments across Hungary. This observational, multicenter registry was established in 2025 to better understand the demographics, diagnosis, treatment, and prognosis of systemic amyloidosis, including its subtypes such as AL, AA, and ATTR amyloidosis. The study aims to consolidate data from both inpatient and outpatient settings to improve knowledge and patient care nationally. This registry includes two patient groups those newly diagnosed and enrolled prospectively from the registrys start, and those diagnosed within 12 months before the study who are enrolled retrospectively. Data collected include demographic details, key imaging and laboratory results, clinical and therapeutic information, and follow-up records. Physicians enter new clinical data routinely while retrospective data from previously diagnosed or deceased patients are also included. Participants contribute data over time through regular clinical follow-ups, with information sourced from electronic health records and hospital databases. The study tracks various baseline and follow-up measures such as organ involvement, diagnostic tests, genetic results, and clinical scores. The registry supports long-term observation, aiming to generate scientific insights and publications by comparing regional and international data without introducing additional treatments or interventions.

Hungarian National Systemic Amyloidosis Registry